How Ehlers Danlos Syndrome Affects My Life

My heart goes out to all my fellow Spoonies ❤
Resources:
List of EDS doctors by country and state: www.ehlers-danlos.com/healthc...
The BEST video to understand EDS, MCAS, & POTS: • Connecting the Dots wi...
Compression socks: sockwellusa.com/products/wome...
SI belt: rstyle.me/+JnBBJuZvzE2NThc4_C...
DAO enzyme: rstyle.me/+WcIKLw7uvD5aLjQytY...
“The Most Common Disease You’ve Never Heard Of” (Podcast featuring researchers finding the genetic marker for hEDS): open.spotify.com/episode/2RPo...
The 4-Phase Histamine Reset Plan: Getting to the Root of Migraines, Eczema, Vertigo, Allergies and More: rstyle.me/+Cpj6jIY7VZ97RVmMCz...
Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexityrstyle.me/+S08Lhs75kXSTNd2dcI...
The Spoon Theory: ehlersdanlosnews.com/health-i...
Timestamps:
00:00 Intro
00:30 Goals for the video
01:21 Thank you
04:08 Hypermobile Ehlers Danlos Syndrome (hEDS)
05:17 How they diagnose hEDS
06:43 hEDS genetic test is coming!
07:14 Mast Cell Activation Syndrome (MCAS)
08:10 How EDS triggers MCAS
08:37 Postural Orthostatic Tachycardia Syndrome (POTS)
09:06 How MCAS, EDS, and POTS are connected
09:43 List of my personal symptoms
11:27 Beginning of my story
11:49 Early symptoms: asthma, allergies, insomnia, sensitivity to light and sound
13:13 Early symptoms: TMJ
13:33 College symptoms: weak immune system
14:17 College symptoms: pain & GI problems
14:36 Worsening insomnia
15:00 Back pain in the service industry
15:47 20’s hip pain, clicking, and sticking
16:07 Hilarious videos of me after surgery
16:55 Traumatic fainting from POTS
18:11 Funny POTS story
19:30 Back injury
24:43 Struggling w/ internalized ableism & shame
25:39 How my social life is affected
36:33 Emotions: validation and hope
37:55 Emotions: grief
40:02 Emotions: fear
40:34 Kids & IVF
41:41 The spoon theory
42:39 Treatment plan
46:24 Outro
Music: Epidemic Sound
✧ ✧ ✧ ✧ ✧ ✧ ✧ ✧ ✧ ✧ ✧ ✧ ✧
Instagram @stateofkait: / stateofkait
TikTok @state.of.kait: / state.of.kait
✧ ✧ ✧ ✧ ✧ ✧ ✧ ✧ ✧ ✧ ✧ ✧ ✧
FTC: This video is not sponsored. Some product links are affiliate links that allow me to earn a small commission through your purchase. Some products were received in PR. This video is not meant for children

[@ashleyellendawson]

It feels like your not sick enough to be disabled but on any given flare day your like … yep nope this is terrible. I feel like I gaslight myself on good days that all of my things don’t exist ….. probably picked that up from the millions of dr’s who gaslight me before. It’s an awful cycle.

[@medinaface]

YES! On good days I'm like...hmmm...do I really have a health condition? And then something else happens and I'm like...ok yeahhhh

[@MixedMel]

This!

[@iwillstom]

You articulated perfectly what it’s like to be on the “milder” end of a disability. It’s almost surreal listening to you because it’s like hearing my own thoughts voiced back to me.

[@ThePrincessdi77]

Came here to say the same thing!!!

[@iwillstom]

It’s been a month and I still think about this post a lot, especially when you do new vids. I’m still amazed to find someone even remotely like me.🙃

[@kateabate4745]

I totally get it. The funny thing my husband is blind but has no trouble with mobility. I have a handicap sticker for myself. I have rheumatoid arthritis and fibromyalgia. Of course they think it for him so I am lucky in a way. But you are so right . If your body looks normal no one gets your pain or fatigue. Then add some asthma. 🙏

[@kateabate4745]

You are so right. You are working and no one knows that your body and your mind are so tired. You run out a steam and you still have 4 more hours to go. The pain doesn’t let you sleep because you can’t get in a good position. I don’t want to take pain meds because I mentally want to be on my game. You don’t want to take Prednisone and deal with those side effects. The Prednisone gave me diabetes because it raises your sugar. I have really struggled to become diet controlled so I don’t have to take medication for that. But as soon as I get sick I have to go on Prednisone and that is how my world turns.

[@kateabate4745]

The same for me no gluten and dairy because I started to get huge welts on my scalp with disgusting seeping of oily substance. I have lost hair and have bald spots and hope some hair comes back. Being off gluten and dairy has helped that but it has taken 9 months and went to three doctors before someone figured that out.

[@taryndaly3081]

Fuck it hit deep down when you mentioned feeling stuck between disabled and able-bodied, and how it leaves you without a sense of identity. To live like that is so isolating, and I can't describe how relieved I felt to hear another person express what's been weighing on me every second of every day. Thank you, I really really needed this...

[@StateofKait]

Sending you gentle hugs

[@purity4all]

You’re definitely not alone.

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@francinemiles7191]

Well said. This is my EXACT sentiment. I can hardly write this without breaking down in tears of gratitude.

[@maryamp1867]

@@StateofKaitI Have eds too and Concerta 54mg takes a lot of pain away from me. Maybe worth to try ❤ ❤❤❤❤

[@katjoyky]

I also have EDS. “I just pushed through it” really hits hard for me. Developed Mitral Valve prolapse and heat sensitivity at 15. Had jaw reconstruction at 16. Developed asthma at 17. My left thigh was numb for months at 17. Developed severe allergies in my 20s, which I still have. My ligaments around my tailbone were pulled during childbirth and my hips hurt for years afterwards. Finally diagnosed in my 40s. Horrible right hip pain now and tachycardia. My left arch in my foot is a constant problem. Amazing how much we push through. Thanks so much for sharing your story. ❤❤❤️

[@DoubleDivergent-zz9cc]

I have these exact diagnosis - which I received at 55 years old. Constant pain… I look “normal”… but barely function some days!!! I sent this to my functional doc. You are so well spoken - I have used your podcast to show people in MY life how life feels ! THANK YOU!!!!! You never mentioned if people viewed you as a hypochondriac. That’s how much family “sees” me.. Excellent, well done!! Thank you!

[@GeodesicSoul]

I never comment on videos, but when you mentioned how you feel “really behind”….that hit hard for me. I don’t have the same illnesses as you, but I do live with a chronic illness that no one can see. I carry intense shame with this too - being “not enough” and “behind in life”. It’s strange and invalidating and frustrating. But it’s a reality that we should, as humans, be TAUGHT about from a very young age - compassion and empathy. I’m so sorry you’ve been suffering this way. I’m sorry the medical community is often not attentive enough to REAL feelings. I hope your new path and new diagnosis brings you some peace and comfort.

[@freshcoastrider]

Praying for you kid. Im 38 and was just diagnosed with MCAS. The regret about the life you could have lived if you were diagnosed sooner is definitely mutual. My journey has taught me a lot of harsh realities about the medical system, what family means, who my friends are. You feel trapped in your body, and its ungodly expensive to get well. This process is teaching me a lot of things about my health that I never would have paid attention to. Its a hard journey, but it makes me feel less alone when someone like yourself explains in detail what its like. Thank you.

[@StateofKait]

Thanks for the love, sending you gentle hugs. I relate to every word you said!

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@MJ-gj6mj]

Expensive to get well....100% true. And sadly, I wonder if I hadn't been so completely exhausted and I hadn't been recovering from sprain after sprain if I would be more financially secure at this time. I almost wanted to make some go fund me but of course I felt guilty about that so never did.

[@amapolacosta4771]

How did they diagnostic Mcas?

[@heatherk6445]

I think this is a really good example to demonstrate why we all need to be practicing more empathy. It's easy to make assumptions about people based on how they appear on the outside. But whether it's an invisible illness with physical symptoms, mental health, neurodivergence, etc. people do a lot of "masking" to fit in and/or cope, which is an exhausting feat. (I say this from experience.) Thank you for sharing your story!

[@StateofKait]

Totally agree

[@vickigodwin8734]

So very true

[@SatumainenOlento]

Very true!!! Like other youtuber with EDS said: "We do not fake symptoms, we fake being well."

[@StateofKait]

@@SatumainenOlento Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@MJ-gj6mj]

Sometimes people see me with my crutches or walking stick and ask, "what happened to you?" It's been strangers and well-meaning people who knew me when I was walking more normal I suppose. I don't know what to say anymore, I've had so many injuries and for no real, great reason. I get hurt doing what others regularly do you know so it's hard....I just wonder how should I respond and how others feel when they get asked those qs.

[@StateofKait]

Update! I was referred to an allergist in LA who said that I do not have MCAS - instead, I have Dysautonomia and Small Intestine Bacterial Overgrowth (SIBO.) I created a second KZbin channel that focuses on my personal life and chronic illness. I filmed two more Chronic Illness videos there so definitely check it out if you found this video helpful: www.youtube.com/@kaitgardner

[@kimmyb1215]

I live in Los Ángeles and have a had a very hard time finding a good doctor. Can you please share your doctors information. Thank you! 🙏🏼

[@debpasko1540]

Please do a part 2. I am a hEDS patient that has also went through dysautonomia and SIBO. I am also a pharmacist and can help you with the meds they gave me for SIBO. But that diet is soooo hard to follow! Also get the book "Disjointed"

[@mtg6748]

Yes please

[@karendale9926]

Please yes can u share the name of the doctor (s) in LA as my daughter needs the type of evaluation and expertise you’ve found for yourself. She’s been feeling sick with a similar set of symptoms for many years and now at 42 one doctor after another dxes her saying “it’s hormonal.” It’s more than that.

[@StateofKait]

​@@kimmyb1215 Immunologist: dr Jonathan Corren, EDS: Prism Spine and Joint (in Maryland but they offer virtual consultations), cardiologist: Dr. Ram Dandillaya

[@jivalucia3916]

Hey zebra sister, I have to thank you for being so raw and real about how life is with these conditions! You said it ALL! I've been wanting to start a youtube channel since I got diagnosed to help people overcome the challenges of EDS and invisible illness and the stigmas around what type of people we are. I believe that we are some of the most misunderstood people out there and we all deserve better treatment and more understanding and support of how EFFED up it living with this. My doctor told me I should really consider adoption instead of creating my own family one day because I could "pass this terrible disease down to your little ones and you wouldn't want to be responsible for that...." That was one of the hardest things I've ever had to hear and knowing the reality of how lonely my future might be without kids. I wasn't aware until recently that passing it on to your child is 50/50......that's a mindfuk because there's a chance your child could be perfectly fine.....another chance they might not be ok., or they might be ok then suddenly develop symptoms :( My doctor told me you can only pass down the type you have, but still. Still grappling with all the losses.

[@taytay1336]

Is there genetic testing you can go to to test this and were is the best spot to go if you live in Virginia

[@jonathanreed5864]

It’s been a journey, babe. So glad you found some answers and I’m ready to support you through the next phase. Proud of you for listening and advocating for yourself.

[@StateofKait]

Love you boo boo!

[@1truthseeking8]

​@@StateofKait have you come across Thiamine and Elliot Overton's work?

[@staym925]

@@1truthseeking8 yes vitamin b1 is a great thing and helps.

[@charmainejennings3474]

@@StateofKait 7:25

[@JescaPilar]

@@StateofKaitwhat kind of doctor do you see for all this?

[@DutchessLady]

Woahh. You described me to a T 🥺 I was fianlllllly diagnosed TODAY with Lupus and EDS. 16 months ago I diagnosed with Celiac, where I had to diagnose myself and begged for weeks for the blood test, which was positive. At that moment I started advocating for myself and all 6 of kids who were diagnosed with Celiac last week. I know they are experiencing the same symptoms you and I both had as kids. This is only the beginning. You said it so well that it's an invisible disease, and people truly don't understand how badly it affects our everyday lives. No one in my life gets it and it fucking sucks and hurts so bad. Thank you so much for sharing your story, it helped so much after an awful and exhausting day 💚

[@cathysm4780]

Yes ceilacs! My daughter is really bad just like this lady but her heart rate use to be 140 to 180 before beta blocker now she gets to 120 beats on bad day. My son was diagnosed with Celiacs. My daughter stopped eatting gluten and her stomach bloating stopped. There has to be a link between celiacs and pots elds and mass cell

[@cathysm4780]

I think I'm going to be checked out next year as Im getting. older I'm getting worse. And I'm just so tired and worn out

[@djsuth7727]

As someone who developed POTS and MCAS as a consequence of covid ( now 3 years and counting ) I can empathise with some of the daily challenges you face. Like you, I feel trapped in that middle ground between being considered disabled and "normal". On my best days I can do some light socialising, on my worst getting out of bed is a herculean task. I, too, grieve all the "normal" activities I can no longer do such as travelling abroad, having meals out with friends, partcipating in sport etc. But my biggest disappointment of all is the lack of understanding amongst the medical establishment. It can be oh so difficult finding someone with expertise in these conditons ; many don't want to know and simply think we're hysterical, depressed or anxious. Anyway, thank you for your video. I found it very relatable. Wishing you all the best for the future !

[@StateofKait]

Wishing you the best too! My boyfriend and I are thinking about starting an organization that raises awareness of EDS and associated conditions within the medical community for that very reason

[@sherrybutts5947]

Purgatory

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@cammag4619]

Like me, but diagnosed with ME after bad infection. POTS and MCAS, it is so disabling. And I never knlw when it hits. One day can do light activity next day so bad.

[@MJ-gj6mj]

I can't tell you how many medical people have dismissed me, rolled their eyes quite literally, told me something to my face but then charted something in my file (I have the Mychart app) that made me sound like some hysterical wing bat making symptoms up. Said how my appearance and this and that was fine. SMH....of course I look fine on the outside and so do hundreds of thousands of other people with chronic illness!

[@sickchick9111]

I have POTS, Lyme Disease, CCI, and just recently the doctors realized I might have EDS and MCAS. So your video was recommended to me. I kept thinking how nice and positive you were (and beautiful) 😃!!So when you said some people might read you as kinda negative when you don't feel well/have low energy I was surprised cause I thought you seemed so likeable, easy to talk to, and overall positive. You mentioned being in line to get a pass for people with disabilities at the concert. And then you saw a guy with a wheelchair and you felt awful. I wanted to encourage you. I understand what you're going through. There are days I have to use a wheelchair cuz I am passing out so much, or my left leg stops working. There are other times I have to wear my oxygen. I could take the oxygen off, walk a few steps, feel awful and people think I looked totally normal. Then I would get in the wheelchair, put the oxygen on, and feel some relief. People would look at me and feel more compassion then they did a few minutes ago. Even though I'd actually feel better in that wheelchair with oxygen than I felt standing "looking normal." I could be the one in that disability line with you. I would want you to be in that line and to get help. Get the pass. There might be a point you have to get a wheelchair in big places because it gets too hard to walk with POTS. We almost pass out, we get nauseated, lightheaded confused, and overall feel awful standing. It stops us from going places. I wheelchair makes it so we're able to go. Just a thought. PS. I have a younger sister who is in a wheelchair because she is paralyzed from the waist down. So I am aware of people who are paralyzed and use wheelchairs as well. She tells me all the time that she's so grateful she's not in my position. She's disabled not chronically ill. She is able to work, drive, have a social life, etc. I can walk around my house but I spend most of my time in bed because of all the pain, fatiguue, snd symptoms. Sounds like you're somewhere in between. Hang in there!! I wish you nothing but the best 🤍!! Here's to you, here's to hope 💪!!

[@StateofKait]

Thank you for taking the time to leave such a kind, thoughtful reply. Sending you gentle hugs!

[@TL-ch1xd]

Took 15 years to get diagnosed with severe M.E., h-EDS, POTS, Cranial/neck instability and mastcell problems. I got diagnosed 2019 and now I’m 41 y.o. My disabling symptoms started in my early 20’s while still at University. I was so ill that I was mostly bed bound in a dark quiet room for years, but tried to function and had to try to work or go back to studies since the Swedish system wouldn’t see me as ill due to lack of diagnosis. Trying to talk, think and function was the worst torture one possibly can imagine and being in my body was like going through a hard, never ending child birth with hormones running wild at the same time as having a severe flue and after being run over by a concrete truck and someone turning a vice around the skull. I’m somewhat better now: I can watch KZbin, communicate, talk and write. But I still struggle 24/7 with many symptoms which worsen as soon as I’ve done something like being outdoors, done normal mental tasks (like now when I watch YT and write). I lost my whole life in my early 20’s. My whole life is me trying to get better. I had so many goals and dreams - now I’m half panicking, struggling with depression and anxiety realising I’m sort of old. These last 20 years all my (former) friends have lived and built lives: They have years of University studies behind them, built careers, have high salaries, love, experiences, families, partners, children … It’s starting to get hard this situation, living isolated, alone, without love, poor, ill and years just fly by.

[@cherylmockotr]

The years do fly by, but they get better. I'm about 15 years ahead of you with similar, although probably less severe, symptoms. I don't even know if MCAS is what I have, but the symptoms sound right and supplements and rest are what keep me going. I got a hypoallergenic dog 6 years ago and she changed my life for the better. I've constantly tried new supplements and meds and tests and doctors, and kept what helped some. I am getting great relief from Splankna, a mind-body trauma release therapy. I work for myself as a pediatric therapist so that I can regulate my hours and caseload, which means sometimes I'm poor and sometimes I'm making it but only just. However my need to work also gives me purpose in the world. I sing at church and stay moderately involved to socialize some. I tend to stay focused just on the present so don't spiral down in fear the future or regret from the past, and it works. None of it would be possible without my faith in God and knowing this life is just a blip in time! I've been angry with him, felt abandoned by him, felt ashamed, felt overlooked... but he's always got me through and given me little blessings all throughout as well. Once I got in my 50's I started becoming more accepting of the huge variations in life journeys and less hard on myself for "not living right." I think that's a life stage thing, and it really helps. So keep going, knowing it will feel better and happier soon even if nothing changes medically!

[@clairem3707]

😢😢😢

[@clairem3707]

This whole thread is so humbling..

[@countyofcaptivatingcorgwn4784]

I was diagnosed 10 years ago (or longer). One thing I learned is not to write off those friends who back off when you’re first diagnosed. I had that happen but they eventually came around once they came to understand my limitations. I also learned not to “over explain” as I used to and now I’ll simply say to an acquaintance that I have something similar to MS, a disease people understand better. The way, they get it and I don’t have to explain and apologize for every limitation and can just get on and enjoy my life. You don’t owe everyone an explanation for you limitations, but listing a similar disease really helps most people understand what you’re going through. Hang in there!

[@lj9524]

Please be more on yourself. You have chronic conditions. You have suffered greatly. As a cancer surviver and RN my heart goes out to you. Please know that others who may judge you are not worth a moment of your time. Praying that you feel better as you make changes you need to to feel the best you can. Take care of yourself❤️

[@StateofKait]

Sending you gentle hugs

[@PrinceFishBoy]

When you started listing symptoms I was like oh wow me too, but by the end I was almost crying. I'm currently on the journey to being diagnosed, doctor basically told me I have EDS, Raynaud's phenomenon, and POTS. Just had a gastroenterology appt for HORRIBLE stomach issues, on the waiting list for a tilt table test. She even said she could put me down for a geneticist but there wouldn't really be anything to come from it. I've been struggling with being active my whole life, only have had jobs where I am on my feet the whole time and it's agonizing. I've tried physical therapy, a chiropractor, and exercise for my knee and back pain and none of it ever helped for long. I'm so happy to have finally started getting on track to hopefully getting answers. I'm only 22 years old, I just want to live a normal life. :')) tysm for sharing your experiences. It's so nice not to feel alone. Edit: Also important to note that I thought so many of these things were just in my head because I'm diagnosed w ADHD, anxiety, depression and OCD. I was so afraid of seeming like a hypochondriac, but my doctor reassured me and literally sat me down and said "Everyone I've diagnosed thinks they're crazy. You're not crazy, you need help." And I think it's so important to remember. Please listen to and BELIEVE your body!!! 💕

[@StateofKait]

YES!! I'm so glad you had doctors who listened to you. Sending big hugs

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@MJ-gj6mj]

But I'm pretty sure ADHD, depression and anxiety are actually common in some cases of any HSD. It would be helpful if you could get diagnosed and properly treated at 22...a lot of people live in pain for years and years with no real answers. Good Luck!

[@megangardner2766]

What a great doctor…⭐️ Yep- lots of info online re spectrum / EDS and ME/CFS /MCAS/POTS all being related in some people,..

[@sloene72]

Wow you have a saint for a Dr. I need a Dr that has more than 10mins

[@macmaccuillinn1266]

Ditto, young lady. As a child, my mother, who was a licensed medical professional, called me a hypocondriac and stupid. Cried myself to sleep every night from the pain. I'm now 62 yrs old and only just being diagnosed; 2 yrs ago. In my early 40's I passed out and fell down two flights of stairs. No broken bones, but I pulled every tendon, muscle, nerve and my spinal cord was severed. Was told I'd never walk again. Today, I walk normally. Spinal cord is completely healed. Thank you for your courage to vlog this. You've giiven me something to bring to my docs attention and I will be sharing your video with my PT doctor, who is now learning more about these medical conditions So much more I could tell..

[@strawberrydialectics]

first of all, thank you for sharing. it was super interesting to hear. secondly, a very small comment that stuck out to me was that you've gotten comments saying you appear slow. this is very fascinating to me, because you dont really come off slow in a general sense at all, but you have a very natural demeanor to me. i feel like people who make those comments have become way too used to the hyper-energetic way that people online speak. this is something more or less of a persona people put on to increase their likeability and engagement or whatever. personally, i find it a little tiring to listen to in every single video (and its just getting worse when it comes to tiktok, shorts, etc). i actually find your calm demeanor really nice and natural to listen to and it doesnt make me feel like youre putting on a hyper fake persona for the camera. thanks for being you!

[@sheabay6]

As your genetic twin who has the same exact life story as yours, please continue to post video updates. I'm already past where you are now and have gone through all the steps, tests, treatments and diagnoses you're about to and are going through. The way you're able to effectively share these genetic conditions is absolutely incredible and you're already beginning to impact tens of thousands with this video alone. THANK YOU from the bottom of my heart because I know it wasn't easy to make this video and know EXACTLY what it's like to walk in your shoes every day. You're not alone. P.S. I do have a few regrets on the SIBO treatments so proceed with caution depending on what they prescribe, but as everyone in our world likes to say "everyone is different". PLEASE PLEASE continue to update us so I can continue SHARING your videos. We can all help each other and learn from one another.

[@StateofKait]

I will, over on my new personal channel called Kait Gardner. Sending you lots of gentle hugs.

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@NSawhney]

May I ask what you didn’t “like” with your SIBO treatments? I’ve done multiple treatments And each have failed. About to start a new round with pharmaceuticals this time. I would greatly appreciate any new insight. ❤

[@Sirensshore]

You're such an intelligent, beautiful, well-adjusted woman, especially for someone who has suffered in silence for so long. Praying you'll find relief and joy now that you have your diagnoses. Blessings and celebrating with you for getting answers!

[@StateofKait]

Thanks for the love!

[@slcoffaro1]

I also feel very stuck in between disability and able bodied community with all three condition and a milder case of all three . Thanks for helping me feel seen in the inbetween

[@StateofKait]

Sending you love!

[@NicoleSandborn]

The bit about changing the way you interact with the world because your body feels like a prison 😭 I felt that!!! Amongst many other lifelong symptoms and dislocations, my collarbone spontaneously subluxed posteriorly at the SC joint (inwards on the chest side). Then and since then my body has felt like such a prison more than ever. 🤗 Thank you so much for sharing this!!!

[@annbarber2571]

Thank you for that well spoken video. I have a developed a chronic illness at 70 years old and i am still going thru grief and i am having trouble accepting my limitations. Listening to amazing you did help me feel that i am not alone . Thank you.

[@StateofKait]

You are not alone! SO many of us struggle with the emotional impact of being sick, and that's why it's important for us to talk about it publicly. We owe it to ourselves to help our fellow chronic illness family feel less alone, AND we can educate those who don't know anything about living with an illness. Sending gentle hugs!

[@genpenjeep7695]

And being 70 adds another twist. I'm 83 with CFS and can tell u from experience that others' are quick to assume that our fatigue, exhaustion, weakness, foggy thinking, etc., is simply due to old age and if we'd taken better care of ourselves when we were younger we wouldn't be in such bad shape. Grr-rr-rr.

[@87HMoore]

Thank you for sharing your story. This was eye-opening for me as an able-bodied person and I will certainly be moving forward with much more compassion for invisible disabilities. I’m so sorry that you feel you have to explain yourself or minimise your experience for fear of being ridiculed- this is not ok and your invisible disability and your experience deserve to be taken just as seriously. Wishing you all the best as you continue on your journey x

[@StateofKait]

Thank you for watching, means a lot

[@Noodlethings]

I just got diagnosed with Heds and disautonomia and only got diagnosed because I nearly fainted in school and during a concert had a knee dislocate. This video is very good with explanations, and being relatable for me. ❤

[@StateofKait]

Hi! I made a video about how to cope with a diagnosis on my personal channel, you may enjoy it. Sending you love. kzbin.info/www/bejne/oqXKaXp5aJpgi6M

[@theangrytiredzebra]

I'm a hEDSer that is wheelchair bound, very severe here but I just want to thank you for making this and spreading awareness. I appreciate you. Thank you thank you thank you!!! You are not selfish. You are disabled. And it's okay.

[@StateofKait]

❤️❤️❤️❤️❤️

[@katearonoff7252]

Thank you so much for verbalizing so many of my own thoughts and experiences about having hEDS here. I feel so validated. I'm so sorry you're going through it all too.

[@zeek4749]

After 25 years of suffering and need surgery on both shoulders and both knees my orthopedic just decided to send me to Stanford hospital for EDS test 😢

[@badeds100]

I have HEDS. I’m 73 years old and was diagnosed at 35 years old by a 2nd year Resident Dr at a teaching hosp in Ca. I had a bleeding time of 19 minutes before my Total Knee Surgery Replacement. I had 22 knee surgeries because of dislocating patella prior to having my Surgery. That is when I was diagnosed. Thank you for telling your story!

[@line_inthe_sand2569]

Sitting here in bed all burnt out, munching my capsicum. Can't upvote enough. Thank you for the detail you put into this. Feel like I'm with family when I watch a video on pots/mcas. Take care folks. I'll post any solutions I find personally on reddit.

[@StateofKait]

Thanks for watching, sending you love

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@thomascrews8598]

I saw your You tube and was really impressed! We have 500 pots patients! We use autonomic anesthetic modulation with safe anesthesia agents with truly life altering symptom modulation! Thomas M Crews MD

[@jacki6301]

Thank you for sharing your experience. After 20 years, I finally got a pots diagnosis. The number of doctors I have seen through the years is staggering. It took a pt to see me almost pass out and stop and do heart rate and blood pressure and said she believes it was pots. She sent numbers to my dr who put me on a heart monitor and a referral to cardiologist who diagnosed it. Thank you

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. I hope it helps: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@juliramoos]

Girl! I just met you through the video of "trends I want to die in 2024" and you said you have eds there. I do too! I love to see content about it. Makes me feel less like an unlucky sick person and more like a normal person who shares a "trait" with a lot of other people. Thanks for that ❤

[@jcc21gg]

I feel you. I am a young woman from Cuba, 28 years of age and currently living in Uruguay (where I got diagnose only a year ago but not available specialists or treatments, most doctors don’t even recognize EDS exists). My whole life I felt isolated and unheard-of, I feel also guilty and sometimes I blame myself for my low energy and wonder if I am faking the symptoms even to myself. It is exhausting. I hope someday I can move to a more developed country and get better care. Thank you for sharing, I am less alone today because of you

[@StateofKait]

❤️❤️❤️❤️❤️❤️

[@MelindasNaturals]

Wow. This was so relatable and it felt like someone was voicing every single experience, confusion, and pain that has been me. The ADA stuff……and especially the “friend” or loved ones who proved to really not be friends or loved ones. Thank you for sharing all of this. It means a lot.

[@StateofKait]

Thanks for listening ❤️

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@rachaelgregory8078]

Hi Kait, at the age of 54 I’ve finally been diagnosed with hEDS, vEDS, POTS and cervical instability after years of pain , fatigue , chronic migraine, photophobia, dry eye , decreased saliva production and the frustration of unanswered questions. For many years I was told I was probably just depressed 🤬 I am also being screened for autoimmune diseases due to developing Latex allergy, autoimmune thyroid disease and a benign thyroid tumour which caused airway issues and vaginal lichen sclerosus which also has an autoimmune origin .... found to have spina bifida at S1 , endometriosis and pelvic organ prolapse. Thank you for being so open x

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. I hope it helps: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@joannsomers2406]

I have found your channel TODAY ! The start of my discovery to MCAS was in1995 ,now all my systems are involved, some are life threatening and some irritating. I have seen so many health care providers , tests, medication, Have been told that nothing wrong with , told that I was , màlingering I was put medical disability in 2013 . I am 75 years old . I am happy to communicate with symptoms that people in a chronic phase prospective. I am just so happy to have found you and the members. Thank God I found all of you. JoAnn

[@loganalu]

I am so serious when I say I feel like we have the exact same story. Even down to the allergy shots as a child …. Wow. It’s just totally maddening and defeating to think about how under researched / misunderstood these conditions are. So unfair to us who are suffering. Thank you so much for sharing your story. ♥️

[@StateofKait]

Sending you love!

[@chaturangaful]

I also have hEDS and it’s been quite a journey figuring out what the heck is wrong with me. It’s one of those situations where you have to do the work and research yourself, advocate for yourself, and almost diagnose yourself. I’m really glad you’ve found some answers, and I hope you can be on the way to learning how to care for yourself. Thanks for educating and bringing our invisible illness to the light 💛

[@StateofKait]

Exactly. The podcast I linked said the average hEDS patient gets diagnosed at 35!

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@alisoncorbett8470]

This is so wonderful how an online community can support healing through sharing knowledge ❤️ 🙌🏾

[@StateofKait]

Oh I have learned SO much from this community. My diagnosis was just one small piece I owe to it.

[@alexsteph44]

OH MY GOSH. We are the same person and I’m bawling right now. I was a sickly kid, asthma, allergies, hypermobility, digestive problems, exhaustion. I had jaw surgery and a double ulnar nerve decompression surgery. I have a torn hip labrum! Anemia and low blood pressure. I’m 33 and have had phases of pushing myself to not give up. I’m too old to be ignored and this is insane to share all the EXACT things as you. I would really love to connect!

[@shannongreenwell1278]

I was diagnosed with the Classic type of EDS, mine is type two. I have MCAS also. Mine is Medicine Allergies. I’m being tested for POTS. I have GERD, Asthma, Epilepsy and Sleep Apnea. Mine is a mild case compared to others who have the same type as me. I’m truly blessed!

[@StateofKait]

I'm so sorry to hear that, Shannon. I just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@jenniferflores755]

Thank you for sharing your story. It’s a sobering reminder that there are people out there that have these invisible diseases in everyday life and it’s important to just be a more compassionate and understanding human being because you never know who is dealing these struggles. ❤️

[@StateofKait]

❤️❤️❤️❤️ totally, that’s a great reminder for all of us

[@maddiegrayce288]

42:24 This reminded me of something my doctor told me regarding my major depressive disorder. During a really sucky depressive episode, I was so miserable that just getting out of bed took 5 spoons, which made doing anything else even harder. My doctor told me that every day, you have a different "best." Trying your best one day might be getting everything on your to-do list done, and your best the next day is getting out of bed and eating a meal. This helped me a lot :) I also heard you say your doctor thinks you might have sleep apnea. I never was able to sleep all the way through the night, or feel like I've gotten enough sleep, which affected everything around me (as I'm sure you know). My doctor had me do 2 sleep studies (I'll be honest, they really suck), and they concluded that I have very severe sleep apnea, which was strange to the doctors because I was so young (14&15 at the time of the sleep studies). I now, as an almost 18 year old girl, have to wear a CPAP machine every night to sleep. Fun. But for real, it changed everything. My sleep is so much better and I feel so much more well-rested, so it's worth it. I hope you are able to find answers and remedies for your pain. Sending love, prayers, and good vibes as always :)

[@StateofKait]

I LOVE that outlook - every day has a different best. I’m dreading the sleep study but I’m hopeful the results will bring me answers that help. ❤️❤️❤️❤️❤️

[@hereforit]

Check out the book BRAIN ENERGY!

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@bunnycup]

Thank you for your video. This very week we are working out I have heds (and my kids as well). I am 52. As I was thinking about how much life I have missed out on naturally from protecting my body, thinking it was as all normal due to medical gaslighting - and you spoke of your grief I was right there myself. Thank you as I now know I can use your video to tell doctors exactly what is happening in my body as it is abingo to your list but 20 years on, multiple fusions etc. wishing you the best

[@thegypsywagonllp]

Just ran across your channel. I’m there with ya! I was in my 50’s before I got my diagnosis. I’m a third generation EDS’er. My dad, me and now my daughter. And finding Dr’s is one of the biggest complaints in my local support group here in the Dayton area. Watch for spinal stenosis too, our weaker collagen makes our spines fragile of course, and I blew two disc which sent shards into my spinal column. I’m bionic with four plates on my spine now 💪🏼 but we have to laugh about something…

[@susanloncar5863]

OMG, you are the first person that is describing all that I’m going through. My doctor just insists that I have fibromyalgia, and makes me feel like I’m crazy. My naturopath was the first to tell me all my symptoms sound like POTS. It’s very difficult to find a doctor that has even heard of POTS. I have chronic fatigue, I pass out/faint every week, I cannot walk anywhere, migraines for days and so on. I understand the “but you look good”. when I travel to Europe to our family home for 6 months, I need a wheelchair and I feel like everyone is thinking I’m scamming the airline. My two huge suitcases with all my medications, vitamins and sleep aids 😂, and everyone saying I’m high maintenance. I cried when you talked about not being able to travel, because although I’m in Europe for 6 months, I can’t go anywhere, I just sit on terrace, or lay on the sofa all day. I can relate to all you’ve said. The one thing I’ve noticed with some of my research is that most people with Chronic fatigue have had mono, and when you said you had it, I went “AHA!”, another one. I truly believe the mono ruined my life. Thank you for sharing this, that I know someone else is going through what I’m going through, and it feels good to write some of this down. ❤❤❤❤❤

[@StateofKait]

Yep, I got mono twice as a kid and that’s when my life went downhill. I’m so bitter about it. 😂 sending you gentle hugs!

[@MJ-gj6mj]

Yes, usually related to some serious infection. Sadly, I am wondering how many have been triggered by a Covid infection or something related to it. Although I have truly had a bunch of symptoms my entire life, right down to the weekly allergy shots & missing school that the video mentioned.....I feel like the last couple years have just taken a total nose dive!

[@susanloncar5863]

@@StateofKait I am ow on a program with Dr. Maggie Yu called transform. We have autoimmune disease. The stuff you learn and implement is intense. I’m in week 6 now and brain fog is gone. My last lab result shows that I am in stage 3 adrenal fatigue. No doctor would check or even I understands the role

[@susanloncar5863]

Of hormones. I highly recommend her program…it’s not cheap, but neither am I or my health.

[@cindicleee]

Sending you so much love and good thoughts!

[@HonorPowell]

Thank you so much for making this video xx💕

[@SueK2001]

Gracious Kait this was so brave of you and selfless to share your story to maybe help others. ❤

[@meganjohnson2246]

Thank you for sharing your story with us, Kait. Your candor will undoubtably help many other people with these diseases, or people who think they could have them. I also very much hope that the future tests and treatments can arm you with more information and get you enough relief to do more of the activities you love. You're an amazing human.

[@noellromatowski8387]

Thank you for sharing your journey and story! I can’t express to you how relatable and validating listening to this was. The invisible illness is devastating in so many ways that you articulated so so well. I cried and was shaking my head YES that’s me! at the explanation of your life.. the feelings, the mass amount of supplements, the crazy tools tricks you do to sleep, just to survive the day! Wow so so so true. I’ve spent well over a decade looking for answers.. doctors who will help and listen. Living bigger cities helps as small towns areas don’t even have doctors who heard MCAS and POTS. It’s beyond tough and than when you hit perimenopause / menopause even worse! Keep sharing and helping others! Stay strong we all need it! ❤

[@StateofKait]

Totally! I live in a remote part of northern California and we have really limited medical care here, so I have to fly to Los Angeles or San Francisco for all of my doctors apts. So expensive and time consuming. Sending you gentle hugs ❤️

[@allarab2612]

Thank you for sharing your story and continuing journey with us 💗

[@tracef195]

You are such a trooper. Praying for you!!

[@stellatrout]

Thank you so much for sharing your experiences. You’ve articulated perfectly the physical, mental and emotional aspects of this confusing and frustrating journey. We have many symptoms and experiences in common and you have inspired me to keep seeking that official diagnosis, it has value. ❤ I morn the potential life that may have been, for both myself and my 83 year old mother who has suffered much more, undiagnosed of course.

[@KatieBarboza]

This is very relatable and I’m so happy you posted it

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@pamela7211]

Wow! I’m so sorry you have had to deal with this! I’m on disability and it happens to be one of those “ya look normal but in horrible pain”, however, I think yours is much more serious than mine. Thanks for sharing your story. 🙏🏼🙏🏼🙏🏼😘

[@StateofKait]

I filmed this years ago and I’m doing much better now! 🩵

[@the_lady_in_black86]

Thank you for sharing your journey with us ❤️

[@meepmoopmeep1]

Thanks so much for sharing your story, Kait. You are going to help more people than you may even realize. You are such a fighter, but I’m so sorry you have to fight at all. Your feelings are so valid. I’m sending you all the love and support! I don’t know if you believe in prayers, but I will pray anyway for you to have as many good days as possible, effective treatments, and people in your life who support you and build you up. ❤️❤️

[@StateofKait]

Thank you for the love!

[@queens6583]

Hi Kait, I can relate to a lot of what your expressing because I was diagnosed with M.S. when I was 47 yrs old, I'm now 68. I worked as a critical care nurse in the ICU which is an emotionally and physically demanding job. I hid my diagnosis from my employer's because I had read and heard of people being discriminated against because of their M.S. especially if it meant taking sick time and needing special consideration. I did not want them to be able to use my illness against me. The first 15 years I had to take injections everyday of my life and these past 6 yrs. it's 3 times a week at a different dose. I cannot explain how hard it is to sometimes do my injections because you develop scar tissues in areas no matter how much you try to rotate sights and emotionally I just have days when I hate it. Now, I am lucky in that my M.S. has been pretty stable and you would never know I have it because I do not need any assistive devices. However I do tire more easily and if I have to walk far I pace myself and I do not tolerate extremes of temperatures. I retired 3 years ago and that was the first time I told friends ( only a handful of non-nursing friends knew) that I had M.S. Their mouths dropped and they could not believe it because I hid it that well. Now at 68 I have thought about getting a handicapped tag because although I can still walk well, I have times of fatigue and my left leg which is weaker causes me to trip sometimes. I'm also afraid that someone will see me park and confront me as a "fraud". As a nurse I know this is not rational because there are many illness that are "invisible" externally but somehow I feel guilty. I used to feel guilty if I had to call in sick because I was having an off day which was stupid. So I get what your saying. BTW, I also had a terrible case of Mononucleosis when I was 19. Don't know if it's related but odd that I had it and my doctor's felt that I probably had M.S. long before I was 47. I'm glad you at least have answers to help guide you forward and I wish you luck.

[@StateofKait]

Wow, it must have been so exhausting to hide your illness. Sending you hugs!

[@anaaguilar7951]

Sending you love. You are amazing for sharing this ❤️

[@clairem3707]

So brave, your video made me emotional. It must've been torture for you to live that way and never know how much harder it was for you than others. You really don't need to keep saying- I know others have it worse. Good luck on your travels. I have a few things you have but I definitely don't have flexible joints or back pain fainting etc. I hope you can recover, thanks for sharing 😢

[@claireelizboncek]

Wow, I may end up sharing *this* video with family and friends. I've been explaining that in between stuck feeling to my few close friends who try to understand. I am not disabled enough for it to be obvious when you see me, but enough so that it interferes with every decision I make on how I spend my day. I have always hesitated to say, I am disabled, because I am not yet "Official Disabled" with the government benefits and all, but based on the most basic meaning of the word, I am very disabled, so I am going to start saying it any time I feel called to overexplain my high maintenance requests. You have a gift with the way you speak and think, keep sharing!

[@StateofKait]

I feel exactly the same way. I’ve had a big mindset shift since I started publicly saying I’m disabled, highly recommend it.

[@TheGarsowTwins]

Love how open and honest you are about this - will definitely help others feel less alone and hopefully you receive all the love and support the internet could offer to kickoff your healing journey! You definitely deserve it, always in awe of your strength Kait! - Carli

[@StateofKait]

You’re the best 😊

[@NancyJulian-dm8xm]

This video brought me to tears. I have struggled with HEDS/MCAS and now Afib/SVT at 50 years old. It is so hard to explain to people that are used to hearing your life story of chronic pain and maybe it's this, maybe it's that...to the point where they just think you are overly anxious and have a psychiatric condition and it's all in your head. Even now having a diagnosis (1 month) I am scared to talk about it with friends and family, because I feel like they don't want to hear it or just dismiss it all again. It is SO isolating. I wish I could share your video with all my friends and family just so they would understand. Thank you for making me feel hope and absolute validation that we are not just mental cases looking for attention. Much respect to you!

[@StateofKait]

Sending you love! I've actually had a lot of people send my video to their friends and family so they could be understood. I'm glad it's been helping people.

[@catduqu83]

Good for you for sharing all of this! Really interesting and I’m so glad you’re getting answers and are able to move forward on your journey. ❤

[@kprogers8638]

WOW!!! I am so thankful I ran across your video this morning.... my symptoms are SO the same and no doctors have been able to understand the weird cyclical and abrupt changes in pain, muscles cramps, fatigue, nausia, sleep disorder, shooting stabbing phantom pains, etc.... I understand you so much, and you have helped me to understand me and have given me hope. Please know how much you are helping by being honest and transparent!

[@StateofKait]

Sending you love!

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@heathermcdearmond8157]

I have never felt something so much. You nailed it

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@stacy8546]

Hugs to you! I'm glad you finally have some answers.

[@gcal65]

Thanks for sharing your story. I’m so happy you at least have some answers. I’m wishing you all the best as you start your treatment

[@MissK27]

I completely agree with your thoughts of needing to “just suck it up” (my words, not yours) when in public settings, because no one can see how much things hurt or how dizzy/uncomfortable we are we put ourselves in compromising positions quite often. I have had so many close calls to seriously hurting myself, or others, because I feel the need to power through situations. Thank you for using your platform to share your journey and also to give a voice to others. It could always be worse but that doesn’t mean some days aren’t really freaking hard! Please continue to share and best wishes as you find ways to cope!

[@StateofKait]

I hope I can start finding my voice and speaking up about my needs in public. SO hard when you don't look sick and you're mostly functional, but if I push myself I'll pay for it. Sending you love!

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. I hope it helps: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@genpenjeep7695]

So true about 'powering through."

[@robinspencer9611]

I’m so sorry you are going through this. I am 61 and have had chronic pain as long as I can remember. I am a distance runner ( not right now) who feels cheated because my body hurts! I’ve been on pain meds for over 25yrs and am trying to ween myself off of them.My doctors ( Kaiser) are of no help! I’ve seen many of them and they barely give me the time of day. I look to be fine ( I fake it till I make It) and don’t complain even though I rarely feel good. I wish you the best my friend and thanks for sharing your story.🥰🌈🦋🌺🌺🌺

[@StateofKait]

I hope you find relief!

[@vivianh9672]

So glad you finally got some answers. I could listen to you talk everyday! Keep pushing forward ❤

[@sistermorphine2579]

You are incredibly strong, it is inspiring! I don't have chronical pain, but when I see a person so purposeful and resilient, who has, I feel that I should do more in my life. I really hope your symptoms have improved a bit, since this video in one year old

[@joanneblakely2498]

Kait I also have invisible diseases, they are all three autoimmune diseases so I understand when you talk about people thinking you are fine because you look fine. I also before being diagnosed always felt that people would think I was just a complainer or a hypochondriac. Kait you have really endured a lot in your life, I hope they find the right cocktail of meds to help you to start feeling better. My heart goes out to you.

[@StateofKait]

Sending hugs!

[@kaitlinbeste]

When I tell someone in my family I feel like I may have this, they laugh. But when they are diagnosed with cancer or something else, it's all the sudden real for them

[@StateofKait]

They do not sound deserving of your love, I’m so sorry. Your feelings and fears are valid and important ❤️

[@sherryobar5750]

Touche!

[@kristateufel124]

I 100% relate. It’s such a painful illness …. Thank you for this video♥️

[@DS-ne7xj]

You explained all that so well. I am so sorry you are going through all of your symptoms. It would be very difficult. I do enjoy your videos and I think you do an amazing job.

[@GinaEvenstar]

THIS! All this! Thank you for saying what I struggle to admit to myself, still, aged nearly 60.

[@StateofKait]

Sending you love

[@GinaEvenstar]

@StateofKait and to you also x I have passed the gene onto both my children and my Granddaughter. That weighs heavily too sometimes even though I had no control over it. From an oldie, don't give up on the yoga altogether. It might not be right for you now, but as I got older and my joints have stiffened up with arthritis, I find it beneficial again. Take care. Thank you again for all you said in your video. x

[@catherinemicheleadams1608]

I appreciate the honesty you give about these illnesses. I don’t have a diagnosis, but starting in March, I began treating my conditions as MCAS. It is the first turnaround for me since becoming increasingly bedridden beginning in 2017. I was unable to move or to eat by earlier this year. Now I can sit at a desk, sometimes for the bulk of a day. I hope to socialize in the coming months. Realizing and treating everything in my body as an allergic reaction has been a revelation. My skin is much, much better, less reactive. Realizing that my reactivity to sun and heat are allergic reactions has given me the chance to give self-love instead of self-hate. I still can’t eat more than five or six foods (the body systems taking the biggest hits for me are skin and digestive system, then the blood vessels and brain). I look forward to hearing any experiences you have in the future.

[@StateofKait]

Wow, the realization of giving yourself love instead of hate is incredible. Your message gives me hope that I will find my triggers one day and be able to make adjustments to feel better. Right now, it feels a little overwhelming since I haven't even started the low histamine diet or any of the lifestyle changes I need to make, but I know that in a year and a half I'll know more about myself. I feel hopeful!

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@robinmarshall7752]

Can you share how your treating yourself? I’m where you are.

[@MoReKen-uf7xn]

Thank you on so much on so many levels. I appreciate you sharing and being vulnerable. I join you in all of the ‘gotta do better’. But hearing I’m not alone inspires me. Thank you again!

[@user-vi3re9wr3o]

I believe you. Wow it must be hard😢 You are honest and this information is something I needed to hear! Thank you for sharing your experience and symptoms. 🕊️

[@nicdelacruz6159]

My sibling sent your video to me saying you described her life and symptoms to a t. I watched the whole thing to better understand her, thank you for sharing all the information and your personal experience.

[@StateofKait]

Thank you for watching, it shows how much you love her ❤️

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@AsOfYetUnnamed]

I've never heard anyone explain my life so eloquently. Thank you for the video, and please keep them coming until you're well and enjoying life. :)

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@krislynka]

Thank you!!! Just "found out" about having EDS, MCAS and POTS a couple days ago. My mother, sister and grandmother have all been affected, so my misery WAS "normal" in my family. Mom and sister both have aneurisms. I've been a nurse, couldn't do it. Carried twins, thought it would kill me. I faint randomly, hurting myself. If I try to meet up with friends, I can't, I'm nauseous, weak, shaking and lightheaded. I've been lying in a bed for 8 years, and have broken all my teeth from clenching my jaw from the pain. I have had 2 spinal fusions and I can feel my vertebrae popping with every breath. The consensus for most of my life has been I'm an attention seeking whiny lazy person. I REALLY relate to the bit about feeling like a jerk getting in an ADA line when I look "normal". Your video is everything I'd like to say, and don't have the energy to say it. I did tell a doc a few years ago that I thought it could be EDS, and they looked at me like I was insane and said "that's really rare, you shouldn't read about rare diseases on the internet, you'll start thinking you have everything". I hope so much your journey has got easier and you're traveling again! I had scheduled a trip to Europe next week. I'm going anyway. I'm going to brace and hydrate and hope for the best, because I may not get the opportunity again. Thank you so much for the eloquent video, and the link, the resources, and the validation. Really needed that today.

[@ArdentlyAna]

You keep saying throughout that your case is mild compared to most, which I don't doubt. But being someone who doesn't have to deal with half of what you've mentioned and described; My goodness! You are such a strong individual. I am so glad you've been validated with your diagnosis. And I am truly sorry to know of all the relationships, opportunities and activities you mourn due to your disease(s). I also want to thank you for going into depth about the toll it takes on your energy and capacity. It helps me better understand and empathize. It also gives insight into your personality. I have been impressed by how vocal you are and this truly brings that aspect of you into a different and brighter light. SO many hugs being sent your way. You're one cool chick, Kait!

[@StateofKait]

I'm so glad this gave you insight into my personality! Maybe now people will understand why I feel so down all the time, haha. When you combine this with a lifetime of emotional trauma...you get an interesting mix to say the least! I'm excited to one day feel free. Thanks for the love

[@shan5193]

Hers sounds severe especially at her age

[@kellie_y]

Oh you will be judged if you get a handicap placard BUT don't let those jerks stop you. I had a temporary one issued while I underwent treatment for my benign brain tumor, and a jerk confronted me as I got out of my car. I didn't have to explain my health issue but I did and he mocked me. This only happened one time during the two months I used handicapped parking. Some people are awful but they can't rule your life and what you need to do for yourself. My mother has multiple sclerosis and her health issues and symptoms weren't taken seriously by family even until her physical health deteriorated significantly. Now that she needs a walker, her health issues are "legitimate" to others 🙄 People have very narrow ideas of what illness looks like. Very happy for you that you have a formal diagnosis! I know that much be an incredible relief ❤

[@StateofKait]

True, I need to just own it and give dirty looks right back at people. I'm sorry your Mom is suffering. Sounds like she's lucky to have you.

[@mariac1437]

What a terrible journey you’ve had so far, I’m glad to hear you finally got a diagnosis, it must feel SO good just to get the right one! At least now you can start feeling like you can work towards managing this in many small and big ways. Your video really touched me and I’m appreciating everything my oldish body can still do, looking forward to better health, always forward

[@melissab8653]

Thank you for sharing you are a light worker taking the time to share and I really do hope it all gets better! 🙏

[@yogi9982]

Hey fellow POTS/MCAS person here. Thank you so much for sharing this with us, been really depressed past few days and this video has been really motivating. Glad to know theres a sliver lining in all this! Was wondering if you could share your favorite vitamins, probiotics, and brands?

[@StateofKait]

I’m so glad this helped you feel a little less alone. My immunologist says he likes culturelle probiotics best, and the vitamins brands are through full script and vary really wildly among brands. I don’t feel comfortable recommending specific vitamins because I truly don’t know why they’re prescribed to me

[@jefferyashmore6477]

I am a 59 year old male, had it since birth heds,mcas, tachardia. 18 operations torn muscles and all the Gerd, sibo, I was 54 before found it out 6 months ago found out about mcas. Cromolyn oral liquid has done wonders for me. On Brighton scale 9/9. My 29 daughter has it also. Took 2 years to get into dr frankamano she has done wonders for me. For years people thought I was lazy, hypochondriac, ect. I worked in a warehouse and destroyed myself physically. I feel very sorry for you people that have it my prayers go out to you. You are exact same as me, my thoughts go out to you. God bless Jeff

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@theseventh5204]

Your story sounds almost the same as mine. After a childhood of pain, in my teens it got too much and I unfortunately started self medicating which led me to decades of being labeled a drug seeking addict. Then this year I suffered a CSF leak, my dura, that surrounds the spinal cord and brain just tore open and all my cerebrospinal fluid leaked out. After fighting hard for treatment I got an epidural blood patch done. Now I'm dealing with the residual symptoms from that and now on a quest to get answers for my lifelong issues. The 'dura mater' means Tough Mother..so why did mine just split open? I keep coming across EDS and connective tissue disorders so I hope my neurologist will be open to the idea of it being a possible diagnosis. I never knew that other people didn't feel this kind of pain each day. It's not normal! I know it will be hard but I need to find answers. Im just so happy you have got answers as it's the not knowing and constant medical gaslighting that really makes conditions like this 100 times harder to deal with. Look Dr, I don't want your drugs, I want ANSWERS.

[@blendofdays]

My story is so similar. I've been dealing with all kinds of issues since childhood. I actually had a CFS back in 2018 while pregnant with my youngest. That was a nightmare. The pain was absolutely incredible. I also spent almost a decade self medicating & have been in recovery for 18yrs but it's been HARD. Especially when I get so sick so often & random things happen like throwing my back or hip or knee out for seemingly no reason.

[@StateofKait]

Just posted my Chronic Illness Story Part 2 on my new channel, which will feature a lot of chronic illness content. Here's the link: kzbin.info/www/bejne/p5fLeneGq7SrbLc

[@lorrainefarnon2549]

Thank you so much for this video. You are a warrior, be proud of yourself. We are proud of you and here for you.

[@StateofKait]

Thank you, I do feel proud!

[@maryarmstrong2231]

Sending you love and a great big thank you for being articulate while being brave. PS your lip in future Kait is 🔥

[@Nemamka]

Scoliosis girlie here with chronic pain in my right hip. :')))) I felt everything you said about invisible disability. Chronic pain is a disability even if you can eat, walk, sleep (eh, so-so), and work. I'm really hoping you got better and thank you so much for sharing your experience.

[@LoveMyGSDs]

I have a good friend who has all three of the same conditions. She’s currently in a wheelchair and has a list of safe foods that you can count on less than two hands. I’m less than a minute into this video and I am already sending (gentle) hugs.

[@StateofKait]

Yeah I'm dreading the diet I have to go on, it sounds SO tough. Sending gentle hugs back!

[@UnrealKatieCopeland]

You are remarkable and WONDERFUL for creating that video. It took me two sit down sessions of doing my lashes to finish it, which makes me wonder how much work you had to put into filming and editing all of that. I am grateful and yes, it was so good to hear you have the exact same challenges.

[@juliepietruszka5089]

Thank you. This is exactly my same symptoms and experiences through my life.

[@karenmavis]

Thank you for sharing Everything you’ve explained is my daughter’s life. I have sent this to her.