An invisible disease | Charis Hill | TEDxSacramentoSalon

[@gypsylady179]

I have had AS for about 20 years. It's a daily battle and I am a warrior. Thank you for speaking about it and raising awareness

[@jazzg.5763]

It is a daily battle. That's the only way I can take it. If I viewed it as dealing with this the rest of my life and most likely getting worse, it's too overwhelming. I remain thankful for the good days.

[@jazzg.5763]

Thank you for raising awareness about AS. I was diagnosed several months ago, but I had been misdiagnosed for years. I always felt the doctors minimized my symptoms, so I learned to stop questioning this feeling that something wasn't right with me. Thank you also for reminding me that I am not being lazy when I feel fatigued! I know we are survivors, but AS is rough! There are nights I just wish for death, the pain is so tremendous and utterly relentless. The invisible part makes it worse. Thank you for sharing so clearly what it is like to live with a chronic (sometimes debilitating) invisible disease. I send you (and all with AS) wishes for good health!

[@syedreazwan1588]

I am going through same suffering no one can relate unless they have AS.

[@jazzg.5763]

@@syedreazwan1588 I understand. I wish you healing and joy. I'm so sorry you have to go through this!

[@syedreazwan1588]

@@jazzg.5763 Thank you. I wishing you the same

[@YaGotdamBoi]

Ug, same with the misdiagnosis and downplaying, I’m glad you finally got the right answer!

[@rishabh1641]

Exactly that invisible part makes it worse , nobody can imagine the difficulties we face daily. I was already suffering from one invisible disorder since childhood ( myotonia congenita) , now one more (ankylosing spondolytis) is added in that list.

[@nicholascobb8523]

When I was first diagnosed, I had already known something wasn't right. I just felt it. I had met a young man who also has AS. I asked him how he felt being 20years my junior. He told me his story and I thought how bad can it be? He hadn't even seen a doctor in almost 2 years. So I was not worried. I kept my life as it was burning both ends as long as I could. I decided I didn't need to change anything. In a month I will be 40. I feel 80. As I kept burning both ends, my flame got smaller and smaller. Not I can barely walk. I share this so no one will make my mistake. Take care of yourselves. For those you love and those that love you.

[@ashish9patel]

yup thats about it ..i have been suffering with AS this sums it up pretty good, its the frustrantion of people thinking you are just lazy..not knowing you were not even able to sleep yesterday...

[@noirhaus6455]

Very well done, thank you for bringing awareness to this terribly insidious disease. A life sentence of constant pain and adversity. Many people do not understand or even believe you because on the outside we appear ok, especially if your young. Thank you

[@ana-a-birdOFparadise34]

My tears is rolling down watching because I know exactly it feels like to be in so much pain, an agonizing pain from my neck to my sacrum and through my arms and legs and feet. I felt very sad and very lonely for many many months because I think no one could really understand how much pain I am was going through everyday family and close friends seem they don't get it. Until today I sometimes still cry not because of pain but because of lack of support.I am diagnosed with degenerative spine disc disease and scoliosis almost 2 years ago but I had watched a video about AS 2 weeks ago, and I am exactly experiencing the sign and symptoms of AS. I also watch a lot of people testimony who had it and I could relate all the pain they had or have experience. I have planned to seek a second opinion about this matter.

[@rrich8550]

I'm glad I stumbled across this video, it's put into words how I have felt for so many years, thank you and good luck

[@KevinTspirit]

Diagnosed last month, 20+ years late, erosion and fusion began long ago. In bed now dealing with uti from biologics, never had a uti in my life lol. Thank you for sharing your/our story, I'm nervous, but no I'm not alone.

[@Blaaggarding]

Ankylosing spondylitis stole my life.

[@bendybennett2751]

Yes this is a debilitating and soul crushing condition. I just spent an entire night in pain, lying there sobbing quietly and wondering if my life is over. I wish more people knew about this...sending love to anyone in chronic pain right now.

[@indi-f8j]

I've had it since age 11; now 64 years old. I was also hit by a texting driver at 75 mph. I've had 13 years of surgery. I still have to work as disability in no way enbles me to live on a basic level. Because it is an invisible disease and we live in an increasingly self obsessed society, people don't notice or completely ignore when I am very sick. I don't speak to my own family as they don't want to acknowlege having a disabled family member. But I've made it this far. It may be lonely and painful, but you can have a productive, creative and dignified life; you have to be extremely strong within yourself. And brave, for every time they cut into you, put a needle in you over and over. For everytime you wake up alone and have to cook, clean, pay the bills.

[@karlagreenwood982]

Symptoms started when I was 12. Officially diagnosed when I was 18. I’m now on Cosentyx Injections every fortnight. The struggle is real.

[@JulieCerrone]

Bravo!! Had me tearing up over here!!!!!!!!!! Great job Charis!

[@timchan]

Glad that you're able to raise awareness for AS Charis - great talk!

[@skisurf76]

Thank you, I also have AS and can absolutely related to you. Your speech summed up my frustration.

[@vietnamjed]

So cool. I always love hearing AS publicly. Thanks for sharing with the world 😄

[@Kitty_JK1]

Thank you for speaking up !! I don't have AS. But have to life with a chronic disease. And yes, the hard fact is, its isolated and many times misunderstood. So thanks for spreading awareness.❤

[@missmochiicecream]

My partner has AS and I'm just extremely thankful that they've been able to catch it early, get on good medication, and have health insurance (mostly) behave well enough to manage it. There are days that are definitely worse than others. I appreciate listening to Charis talk about their experience with AS and bringing the reality of it to a forefront and especially emphasizing the ways that people can help on a day-to-day basis. I have opened many jars for my partner and I will continue to do so whenever they ask it - and any other tasks - of me. :)

[@anitaboddie1073]

Thank you for this. I pray more people see this. Right now I am just hanging on.

[@judithwilliams3835]

Thank you Charis. As a fellow AS sufferer I found your talk most helpful xx

[@CdnMommy3]

I was just recently diagnosed with AS after 6 very hard long years. I was also diagnosed with RA at the age of 26. I’m 39 now. I read your article and cried the entire time. It was the first time I heard someone else say what I think everyday. Thank you. And I’m very sorry about your dad’s passing. 💜

[@shirleygodwin6596]

Well said Charis - "invite us into your lives" - help us feel worthy of friendship and love in spite of this debilitating illness.

[@richardhoward5506]

Thank you Charis. so good.

[@sidoney101]

I was recently diagnosed with AS. So far it's fairly mild luckily. Frustrating is when I try to explain it to someone and I get blank looks and something like "But you look fine". Before I was diagnosed I'd never heard of it. Now I want to scream why we're all so badly educated about it.

[@chriswoyce6285]

@sidoney101 did you have high inflammation markers in your bloodwork?

[@rockbodz]

Well done for your strength and speaking up. Love the part about people giving us medical advice....happens so often. Stay strong xx

[@analysisparalysis1586]

Wonderful Charis! I can so relate to the invisible symptoms of AS myself, and of course the responses/medical comments from others are frustrating. And the frustration of how others don't care to pronounce ankylosing spondylitis correctly... about as annoying hearing others incorrectly pronounce Gretchen living in the South! Thank you Charis! You are a great speaker! Your Facebook friend, Gretchen Marie

[@tonyday7128]

I am 71. I've had AS for 54 years. A pharmacist at Tesco told me that my spine would become a right angle if I lived long enough. She accompanied this encouraging prognosis by crooking her little finger into a right angle. As they say at Tesco...every little bit helps!

[@michaelmallinson4063]

Thanks Charis. Very well done.

[@SahilDhingra185]

you are a brave soul and so is all of us facing a.s. We are. spartans and healty body and life is our sparta. We are going to fight till our last breath despite of the societal challenges.

[@TuggerAbbey]

Been sick my whole life and was in a car accident in my 30’s and diagnosed with fusions in my neck. It was shaken off and called Klippel Feil disease. I continued to get more fusions and pain and now have a terrible osteophyte pressing on my spinal cord and esophagus. I am now 52 and “just diagnosed with AS” If my doctors had listened to me in my teens I would not be in such bad shape. I cannot find a doctor to remove to osteophyte. I too was told by doctor after doctor in my teens and 20’s that I am too young to be in such pain and exhaustion. Now the damage is done and starting to lose feeling in my feet and hands because my spine is so bad. I am glad you got diagnosed earlier than me.

[@34efi]

Thanks Charis! well done! !

[@ganesan6503]

Hi I am also affected by ankylosing spondylitis and I am from (Tamil Nadu, INDIA), when I was young, the pain started but it was on my hips and legs only, I consulted ortho doctors they didn't know what happens to me and the pain spread to backbones and then finally at 19 age I am unable to walk and then my eyes are gone red I took treatment from a rheumatologist, and also with an eye doctor, now I was ok only with little pain and stiffness and my eye pain is gone with a month step by step by eyedrop, and I followed the food habits which are given below and completely reduced the stiffness in the hip, neck, but with little stiffness in back pain, after 3 years of regular exercise and doctor visit once in one to three month, with in six month treatment i started reduced using the pain killer, which is two tablets daily to one tablet daily to one tablet for three days and then one tablets for a week according to my condition doctor will reduce the pain killer dosage or the no.of tablets, but other tablets are reduced or changed according to the treatment by the doctor, but till now I take tablets but not pain killers. some of them also may find pain in hands (stiffness in hands) and also digestion problems at the later stage, if the treatment is not taken properly. so, please consult a rheumatologist if you feel stiffness in many joints. How to find ankylosing spondylitis? By blood test Tips for all First Avoid drinking coffee for lifetime, if you wish to drink tea you can drink in the evening time only, avoid white sugar and artificial sweeteners use traditional sugar. Do regular exercise at morning and and walk some distance to release the stiffness, I am doing exercise daily and reduces the pain, but I was a little slow in walk, which can be changed later, at first do small stretching exercise(exercise can be done at bed itself then later on the stiffness will be reduced day by day you can do exercise and flat ground later, I also recommend physical exercise from physiotherapist, the stiffness only reduce when we do exercise, painkiller only reduce pain for certain time limits,it will not help us to reduce the stiffness, Make regular check-ups with a doctor only with rheumatologist for treatment Eat healthy foods like dates, honey vegetables fruits and drink more water, Avoid all non-veg items like chicken, egg, fish, mutton etc... Do not use food with high sour like pickles etc.. Do not eat food from freezer during rainy and cloudy climates, Take medicine with hot water, bath in hot water which reduces the stiffness. Do not sit in a place for a long time, take a small walk for a while. Reduces ur weight or do not get weighted because it may increase pain legs and hips which take the whole weight of the body. Take oil bath once in month or two weeks once as ur wish by using Gingelly Oil, or take oil massage During the rainy season the pain may increase when it rains or in cold climate, don't let our confidence level down. Follow all my tips and also food habits from your doctor. do your regular activities like others, and you will be all right one day. don't get depressed due to pain. How can I found my treatment is going on the right way If your morning stiffness gets reduced with three to six month of treatment with regular exercise and good eating habits, it mean that you are going in a correct ways or not you can change the treatment by consulting ur rheumatoloigst( by change of drugs ).

[@nikhildehra8151]

Thanks sir fr the information

[@jecenth]

Hello I am from Tamilnadu recenty diagnosed with AS. I wish to talk to you regarding treatment. Plz message me @ 9600845588. Thanks

[@psh7193]

Why AS can’t drink coffee?

[@neerajcesc]

What is your mob no..Want to discuss with you

[@Kevatron-qk9op]

Thank you. Thank you.. Thank you!!!

[@firebearva]

I am sorry for the loss of your father to complications from AS. I was just diagnosed after so many years of not knowing what was wrong with me. I finally found a doctor who could tell me and I find comfort in knowing. I am trying to get my Medicare part D to cover Cosentyx which my doctor says is the best course of treatment, but I have been disapproved and am appealing the Medicare disapproval though even if approved I am not sure if I can afford the copay. I wouldn't wish this disease on my worst enemy.

[@jackclothier7985]

I’m 19 and was recently diagnosed with AS. Scariest part is that it was caused by accutane. The loneliness you talk about with having a chronic disease is so true, and I feel like even amongst others with the condition, my story is especially unusual. I did enjoy listening to this though

[@bobtaylor170]

I have a traumatic brain injury, not AS, but so many of us TBI patients, maybe more than 50%, don't have visible symptoms, either. It is maddening to be disbelieved. I've found it wise to cut such people out of my life immediately.

[@texmexgal]

I have RA. It is terrible . I go thru all you do. I am sorry for your pain. Life sucks

[@Tlyne10]

I can relate. I have RA

[@rockbodz]

Tamrelyne Momin same. Real tough illness huh. Hope you doing ok

[@magicalpatterns]

Amen 🙏🏼 I have systemic Lupus. I just wish people would just ask me instead of giving me advice or treat me like I’m my illness

[@michaelvandorn2756]

I have had AS for 38 years. I feel like I survived torture. Suicide was tempting. I have had psoriasis for 45 years. Without my relationship with GOD I do not think I would be around...✝️🙏🇺🇸🌎

[@kevinmcguire3715]

49 years with AS and I emphatically agree about knowing Him being helpful!

[@karenkleckner131]

I totally understand.

[@cydneyhaug-west8676]

Bravissima! So proud of you.

[@davidandersen9177]

Bravo 💯

[@amittrivenisingh1565]

I am with RA last 25 years

[@mickihogan2279]

Hey lady,, @beingcharis ,beautiful work,,keep it up!!!

[@andymcparland7805]

Well done more people (especially the medical profession ) should be made aware of this. I'm sick of going to the hospital, dentist,etc and having to first explain the drugs I'm on and then when asked what they are for met with anky what ?

[@robinbradley2229]

I do take offense to ankylosing spondylitis being called an invisible disease. In my case, it is the furthest thing from invisible. The damage to my posture and my loss of Mobility are definitely noticeable. For almost 20 years it has taken over my life but definitely not in an invisible way. I am grateful that people are paying more attention to this disease especially since my son, my grandfather and I have had to suffer from it. It affects many people in different ways and if it doesn't visibly affect the way in which you look, move and how bad you feel then you are pretty freaking lucky. Ankylosing Spondylitis sucks!!!!!

[@gypsylady179]

Robin Bradley it has disfigured me as well fellow warrior! Sending much love to you

[@LeeBauermeister]

You are amazing! I have AS too-I also feel like the picture of a girl at the window....I am 58 and have had scoliosis since I was 13 (first surgery at 15). Please let me know how I can support you in your journey.xoxo Lee

[@anthonyledington3143]

Just started humira for my AS.

[@matthubbert5958]

Thank you 👍🏼

[@rishabh1641]

I am also suffering from 2 invisible diseases ankylosing spondolytis and myotonia congenita ( it makes your muscles stiff). I face severe Stiffness and body pain that makes my night horrible , slight fever in night , low energy, stiff muscles and spine. Managing these 2 problems is getting really challenging for me.

[@Sonadxb]

I am suffering from AS for 4 years it's invisible pain .. people who don't have that problem can't understand the pain we suffer . Only yoga is helping me there is no cure for this pro..

[@2nd_thought]

I am all suffering from AS.i am just 25.few months ago I got to know about As.could you shaRe your experience with me.pelase

[@a-mstng6386]

I'm going into my freshman year with AS. It's gonna be tough but I will push through 👍

[@VixxyMcN]

I get told all of this even my GPA my father has AS and I struggle with chronic fibro and I am getting a hunch back

[@thaumatology]

After 3 days in the hospital with an intractable fever of unknown origin, unprecedented whole body pain and inflammation and dramatically elevated labs - CRP/ESR - I was getting ready to discharge and follow up with my rheumatologist. I, myself, happen to be a nurse and while I was interacting with the nurses caring for me I heard many. times "How come you're not on disability? You should. apply for disability since you're unable to work right now". it was disheartening. I know they meant well in some way but it was also very insulting, that is such a personal decision. When I was getting ready to discharge to home on the afternoon of the 4th day, the nurse manager came by to ask how my care was and after exchanging some pleasantries she looked at me and stated "You don't look like a patient." I stared back at her quizzically, waiting for her to explain, but she didn't. I said nothing. "You just don't look like a typical patient here." I didn't have the energy to go into conversation with her just to entertain her curiosity or figure out what she meant, so I just shrugged and smiled and went on home.

[@chaschk2]

I have RA and understand what you're going through.

[@javieriribe8699]

I have AS at 26 and it's a nightmare.

[@rondarawson6236]

Your telling me that it's not real? That I'm lying????.........this is what I hear.....my sons back is fused and he is disabled but disability won't help him and doctors told him to exercise more.....he used to run everyday with pain and was even a boxer until he couldn't move out of bed...I carry the positive HLA gene...I'm positive he has it....I wish doctors would truly help....

[@OldSoul2779]

I was categorised as AS for many years but having no sacroiliac changes, now they say it’s spondilo arthropathy . In short, we don’t know what to do with you. No one understands our lot,except for a fellow sufferer. Coz most Doctors are nonchalant.

[@citlalie9791]

I can relate I have sjogrens

[@robinbradley2229]

My apologies Charis. I do not mean to downplay your experience with ankylosing spondylitis . I've been sick for a long time and I'm just struggling. Pray for a cure🙏

[@govindsinghpawar2961]

I am suffering from As.... A Doctor....

you should get the full experience.. have your patients call you drug seeking when you have pain and drop you as DR ...

[@kidcitylynnwood6324]

She's wrong, the Drs don't know the most, other people with AS do, listen to them. Or the uncle's cousin's sister. Drs don't tell you everything. Having an invisible illness , others have helped me way more then Drs.

[@benjamingruder4875]

Good point, but (I know you know this, but for those reading) make sure they actually have AS, not just 'arthritis' as what's good for one is not necessarily good for the other.

[@nikhilalbert3084]

Fasting mimicking diet cures these.

[@KittyLuvYou]

Take all the antiinflammatories!

[@benjamingruder4875]

Important point. People shouldn't get into the trap that they should address all the supposed 'underlying causes' (diet, psycyology, etc) rather than seek pain relief. Pain prevents exercise which hastens fusion. Moving the joints plus building strength is crucial to managing this disease.

[@daniellacolella5300]

Good point Benjamin, in addition to the fact the anti inflammatory drugs often cause more upset to your digestive system and cause flares of the ibd which is common with AS, mouth ulcers and all sorts of bad side effects... (says me who has a mouth full of ulcers because of the naproxen I had to take due to a massive flare last week.

[@power3433]

Which antiinflammatory please suggest

[@danplugaru8187]

Your father has ankylosing spondylitis but with respect you dont have AS ! You make a great mistakes! Why you dont say what show x-rays and blood test for inflamation! All is for comercial this video! After 60 years of ankylosing spondyliis and thousand cases seen i know what i say....! AS HAS 2 FORMS 1. RADIOGRAPHIC FORM AND IS PREDOM I NANT IN YOUNG MAN ( LIKE YOUR FATHER IN HIS YOUTH) AND VISIBLE ON X-RAYS...AND BLOOD TEST OF INFOAMATION...AND 2. NONRADIOGRAPHIC AS which is most in women and 99% is with no spine fusion and mot visible on x-rays and in inflamation test! You will not have spine fusion and in women manifest different!! I understand that what you are doing is in memorry of your father and for commercial reason!! I have AS for 60 years and study thousand of cases .. please leave the comercial part of this video!!

[@michaelmallinson4063]

Thanks Charis. Very well done.