Invisible Illness and Incommunicable Diseases: Emily Reach White at TEDxGreenville

Emily watched in silence and shame as her dad struggled with Chronic Lyme Disease for over ten years. After his death in 2007, she began to question: What makes some diseases more culturally visible, and more culturally acceptable, than others? In her talk, she explains that not all diseases are created equal and how narrative medicine can help right these inequalities.
Emily Reach White is the co-founder of Paris MTN Scout, a production company dedicated to bringing micro-budget, artistically ambitious, non-cynical films to market. In this role, she has worked as the story editor on one feature film, TAKEN IN, and two short films, GOOD LIFE (2010) and DOBRA OJCA (2012). She is the co-writer and co-director of GET BETTER (2012), which is loosely based on writing from her blog (www.GetBetterTheMovie.com / www.emilyreachwhite.com) and her dad's fight with late-stage Lyme disease. Emily has an M.A. in English Literature from Miami University of Ohio, half of a PhD in English Literature from the University of South Carolina, and has recently started a Creative Nonfiction M.F.A. program at Goucher College. She lives in Greenville, SC with her husband and writing partner, Chris White
Emily Reach White is the co-founder of Paris MTN Scout, a production company dedicated to bringing micro-budget, artistically ambitious, non-cynical films to market. In this role, she has worked as the story editor on one feature film, TAKEN IN, and two short films, GOOD LIFE (2010) and DOBRA OJCA (2012). She is the co-writer and co-director of GET BETTER (2012), which is loosely based on writing from her blog and her dad's fight with late-stage Lyme disease.
Emily has an M.A. in English Literature from Miami University of Ohio, half of a PhD in English Literature from the University of South Carolina, and has recently started a Creative Nonfiction M.F.A. program at Goucher College. She lives in Greenville, SC with her husband and writing partner, Chris White.
You can connect with Emily on the internet via her facebook page, twitter and LinkedIn or her website at EmilyReachWhite.com
In the spirit of ideas worth spreading, TEDx is a program of local, self-organized events that bring people together to share a TED-like experience. At a TEDx event, TEDTalks video and live speakers combine to spark deep discussion and connection in a small group. These local, self-organized events are branded TEDx, where x = independently organized TED event. The TED Conference provides general guidance for the TEDx program, but individual TEDx events are self-organized.* (*Subject to certain rules and regulations)

[@jaketaylor2775]

This is so important. People don't realize how shitty people with chronic illnessess are treated by society, especially if it's an invisible illness. Only the people who have been sick, or have been there everyday with the person who's chronically ill really get it. Thank you so much for making this. As horrible as it is that this is the way our society works, it's comforting to know that I'm not alone in dealing with people who just don't understand it. I've been told I'm lazy, that I'm not trying hard enough to get better, that I miss too many school days, that I need to try harder, that I need to be more active, etc, and sometimes I just want to scream. I really wish it was possible to transfer my illness to someone for a day so they could see what it's like. They'd never tell me to try harder again

[@reacheb]

Really great response. We act like sickness is a character flaw rather than something that happens to a person...at least, with these invisible illnesses, we do. Feel free to reach out to me on Facebook if you want to: Emily Reach White

[@schoolkutielake5336]

Great video content! Sorry for the intrusion, I would love your thoughts. Have you considered - Dinanlinson Rebooting Health Approach (Have a quick look on google cant remember the place now)? It is a good exclusive product for getting rid of chronic fatigue syndrome without the normal expense. Ive heard some extraordinary things about it and my buddy at last got astronomical results with it.

[@bzba1358]

No they wouldn’t and their ver first day of experiencing life in your body will make them cry in fear and terror! I’m sure many of us remember that day when we woke up and everything had changed.

[@AnnaMae41194]

I've had symptoms of a potentially fatal disease for 5 years and only just got my diagnoses a month ago. It's been horrible for the past two years and I didn't even realize how bad it had gotten until I started getting my medication. I've had dizzy spells come on so fast and hard that I can't see or hear and I have to catch myself so I don't fall over. I was (and still am if I'm honest) always lightheaded and weak and had little to no motivation to even make myself a single meal for the day. My job let me go for sitting more days than not and for not coming in on time twice while I was in a coma in bed. I was in the emergency room three times for this disease before I got a diagnosis and I can't find a job to replace the one I lost 6 months ago. Sometimes I wish I'd never learned to hide it on my face when I was working fast food (which I did because more than one customer thought I'd infected their food), but I did and that only makes people judge my apparent laziness more. It's a problem.

[@thegraveyard1858]

Jake Taylor it’s like you read my mind. I was called lazy today, but simply put I just have chronic fatigue caused by two incurable chronic illnesses that my family seems to never understand.

[@deise.spoonie]

I have fibromyalgia and I can relate to everything she says. People don't understand it, and they don't wanna know about flares or something. They just wanna hear 'fine' for 'how are you?'. That is so tiresome. I am not ok, thanks for asking but not caring at all.

[@fabulousdolphin4221]

typical American attitude...i hear you fully...they dont care one bit.

[@lamppuu1]

This is universal, not only in america. I have fibromyalgia too and i fully agree. They only want to hear if im doing better. Whatever. At least one of my friends understands, i don't have to talk about it to anyone else. My ex colleague said to my face that the whole floor (of our workplace) thinks fibromyalgia is a "fakers disease" 🤬 after that i haven't talked about it to anyone who i don't personally know. Those who don't have fibro, do not understand. Unless they have MS, because we seem to share many symptoms.

[@judithgockel1001]

Deise Spoonie e a Fibro I just say ‘rocking along’. This commits me to nothing, but provides a civil answer.

[@ladystrange7791]

I LOVE that

[@ivyc.6936]

I have Lupus, RA, Fibromyalgia etc…Most people are quite rude. Many don’t care to listen or take me seriously.

[@Peldyn]

I was told by an aquaintance, after my diagnosis of RA, "at least it is not cancer." Thank you.I have a debilitating, incurable, disfiguring disease that will kill me eventually. But sure, it is not cancer.

[@user-wz4nn4ii4r]

Peldyn - Life with Cats 💗

[@ivyc.6936]

I have RA, Lupus/SLE, Fibromyalgia and other autoimmune disorders and complications and I feel like is killing me softly….ongoing chronic pain, etc. 😖

[@shym9933]

I rarely tell people I am sick because I find it pointless. People do not know what it is and don't care.

[@remon563]

indeed. People will only see the shell of a person and cannot imagine there is more to someone then meets their eye. You can tell them you are heavily suffering but in most cases people will not be able to relate simply because they never had a similar experience. This is why ignorance, and the acknowledgement of ignorance, is such a problem as it results in conflict rather then empathy.

[@kidcitylynnwood6324]

I have fibromyalgia, so I'm with you.

[@michaelao9672]

Or you get the well meaning but infuriating "have you tried * * *. My friend's cousin's brother's uncle had the same thing (actually no they didn't but that's how little you know/listen) and they cured it just by doing..."

[@lamppuu1]

@@michaelao9672 YEEEESSS!! Uuuuugh!!! "Have you tried vitamin D?" Ofcourse some vitamins will cure anything! 🙈😂 Shows how much people understand about fibromyalgia. If someone asks, i just say that im in constant, chronic pain and it usually ends the conversation and the person maybe understands. Which is fine for me.

[@michaelao9672]

@@lamppuu1 my problem is if I'm too vague people are convinced they've had the same thing as me... I wish. It's only once I show people my scars (which is a huuuuuge thing for me and only a small handful have see ) that they finally accept that what I have is like nothing they've ever experienced so their well meaning advise is of no help at all

[@helpmetosleep]

I was told to "try depression meds" by the first cardiologist. The second said, "It's totally valid that you're here, let's schedule a echo." And after the results, I'm now on heart meds. Invisible illness is rough.

[@Tuda217]

Thank you. I suffer from Auto-Immune Hepatitis when I turned 20. I'm now 26. I use to say the same thing, "Why do people with Cancer get treated better?" People don't understand & have told me, "It's ok, you'll get better." This disease in incurable & also rare. I make up a "happy" story so it can be easy for them to take in & relate. I realized, I don't have to be sorry for not being a Cancer patient or a "special kind" of sick to get their sympathy. I want to, & am now going to, start making it heard & be known without apology. I am not ashamed of my illness. I have more courage & willingness than anyone who stands before me. Our stories have to be told.

[@howardjohnson8980]

Look into TLR2 and QUIN Acid, this will be the nest science and helping to stop these neurodegenerative disorders.

[@bobtaylor170]

Justine O., Congratulations. I know what it is to have transcended decades of shame about a disease I couldn't help, traumatic brain injury. Now, I have disgust and contempt for those who treated me like dirt. I know that I'm at an uncountably higher, ineffable level of human excellence and courage above them, and that they're the actual dirt.

[@bluzuki13]

I'm a 22 y/o F that has been sick and in chronic pain for almost 3 years. DUring this time I have lost almost al my friends, as no one understands what I'm going through.. no one seems to care. This is because I have NO diagnosis, and perhaps never will. This was a beautiful talk. It is sad that we are not alone but also good that we are not alone. Hopefully soon the medical community will change.

[@Gpacharlie]

This may not help but, you didn't lose your friends, they just didn't 'wait up' for you. People have an amazing way of not seeing what is right in front of them, so if it gets behind them; forget about it.

[@reacheb]

I'm sorry to hear this. I am glad that you enjoyed the talk. Feel free to reach out to me if you want to. I'm on Facebook.

[@LulitaInPita]

bluzuki13 is this chronic muscle and soft tissue pain? If so go to a rheumatologist and ask them about Fibromyalgia.

[@KathleenJean53]

LulitaInPita Fibromyalgia is not a cause, it is a group of symptoms. It takes real science to figure it out and now there is evidence building that MS, ALS, Alzheimer's, Fibromyalgia, etc. could be caused by infections and in many cases the infection is Lyme and co-related infections. It takes dedicated and compassionate doctors and even then a cure is elusive.

[@LulitaInPita]

When did I say that it was a cause? And I know all that, I just happen to have it. It's not even a muscle/soft tissue illness, it's a neurological disease; the pain is just a symptom.

[@brendahankins9187]

I grew up with a mom who was ill with an invisible neuroimmune disease too. I watched her be treated nasty and it was a shameful thing we hid. Then I got ill with an invisible neuroimmune disease too. I couldn't talk about it for 7 years. I came to a low point in my life 2 years ago and watched this video then. It played a role along with other things in encouraging me to come out of the closet. Now I'm in the public raising awareness and funds for neuroimmune diseases. Thanks Emily xo

[@reacheb]

Brenda Hankins So glad to hear it, Brenda. One of my deepest regrets is that I wasted any time feeling ashamed of my dad's illness. If I had known I'd only get 28 years with him, I wouldn't have wasted one second caring what other people thought.

[@Gpacharlie]

+Emily R As. Father of a 29 year old girl, and as one who has suffered daily from a chronic pain condition I can tell you that your father is bursting with pride right now.

[@paul2019monte]

My Mom, too. My family was brutal to her. I have been unsupported by them also. We both have/had ME/CFS. I feel her pain every day. She had no answers. At least I know. ♡

[@lady_wasser]

18 dislikes, all from the CDC. No one cares we are dying. Not even our families. Everyone thinks we’re crazy. Thank you so much for sharing your story.

[@katharina6200]

Thank you! Exactly what I think! I'm 14 and my mom has Lyme-disease. Two days ago I heard her crying and of course she tried to hide it. After I asked her what's wrong she said that she doesn't know how to go on. That she just wants this pain to end , that she wants to live again, and if it doesn't get better she just don't know how. It broke my heart. And it breaks my heart day for day , over and over again. Seeing this person I love so much in pain , changed by pain. I didn't tell my friends for nearly a year that my mom is ill, because her Lyme-disease wasn't diagnosed already . Now her pain has a name. But of course they can't really understand what that means. And I always wished I just could say it's this and people understand . It's hard to find people who listen and at least try to understand. Though the most people won't realize how big this weight feels and how it is seeing your mom in pain every day til they go through the same on their own. I just hope that the doctors will find something that works, I'm just afraid of losing her, and I don't only mean death. I love her so much, and that's what makes it so hard. And what was also said in the video that important treatment doesn't get paid. Not only that these people fight against sickness and their own body , they also need to fight for things that should be granted in rich countrys like we life in , especially because it's not less important than treatment for people who have cancer. But in the end sickness is the same what ever it's called. It's suffering. Cancer , Lyme and all the others... (Sorry for Grammar and stuff , I'm from Germany, still learning english)

[@fabulousdolphin4221]

I wish you and your Mum the best.

[@HighFiveFriend]

Praying she has found healing ❤️

[@polarbearrevolution]

😭 Crying real tears for your story and all of our painful stories.The best thing I've done is start taking thc & cbd for my pain (mental & pyshical) just incase that might help anyone. best wishes to you all xx

[@mulliganstew72]

Thank you, for shedding light on a very dark subject. Short/Long term disability benefits are often denied for those with invisible illness, dating/social life is nil, career options limited...people say, “just tough it out, change diet”, etc. etc. . I don’t have Lyme but another invisible illness & I’m new to this. I don’t know how to talk about it. Whenever I do I regret it as it’s so misunderstood. I had no idea how cold the world is to us. There’s nothing...no programs available for assistance. Doctors don’t know what to do with it...Your Dad is so proud of you!!

[@suemcdougall2312]

So True. Don't let the story die. Lyme Disease is so devastating in many ways. The out of pocket expenses for treatment is a struggle in itself for survival.

[@screamingdoor]

Wow, such an amazing story. Thank you for sharing. I've been battling Lyme Disease for the past 12 years or so of my life. I am in a wheel chair and I'm no stranger to "at least it's not cancer". I've been told by doctors that I am crazy and that my disease doesn't exist. It took me 7 tests to be diagnosed, as generalized testing isn't reliable and I had to go out of state to have a reliable test done to be diagnosed and treated. I've never positively responded to medication and in living in the hospital for treatment put me in a wheelchair with the terrible antibiotics and inability to move. I've now been in a chair for about a year... Maybe a tad bit longer... The love of my life, the girl of my dreams, the one that I was going to marry, cheated on me several times and after three years of dedication, simply walked away. I've lost friends, family and loved ones because I am seen as "lazy" and I am told that I don't help myself, when getting out of bed is even a task that takes a pep talk every day. It wasn't until 2 months ago that I had finally responded to medication and the disease was miraculously gone and these people that abandoned me started to flood back into my life looking for their place, but it was short lived. I was told last week that my latest test revealed an active band and my CD57 was sitting at 13. This disease is definitely not for those with a weak mind. Thank you for sharing your fathers story in order to inspire others and make a connection with people who may not know about this disease.

[@Gpacharlie]

So sorry. I have been in constant pain from a chronic pain condition that began in my spine and spinal cord.

[@reacheb]

It took 7 years for my dad to get diagnosed as well. I am sorry that you've been so disabled. Feel free to reach out to me on Facebook: Emily Reach White.

[@MissChrissyM1]

screamingdoor please tell me your symptoms. I had 6 Lyme tests in NY and 6 in Ca. All negative. The last test was performed by Igenix Lab. Again negative. I have aching, neuropathy and stiffness In arms legs hands and feet. I’m homebound and bedridden. I have Fibromyalgia and Hashimoto’s autoimmune.

[@kidcitylynnwood6324]

I'm sorry, do anything to you can every day to bring joy to your life.

[@kidcitylynnwood6324]

@@MissChrissyM1 me too, I've tried everything, some things work for a while. I'm going to try Adderall next, I've heard good things, wish me luck. I wish you luck.

[@shoshannafachima1306]

I was told for seven years that my problem was psychological until one fine day I was diagnosed with a slow variant of ALS an dystonia.i was angry, frustrated and frankly almost convinced that I was going crazy until that "fine day". Your talk was eloquent and so meaningful.thank you so much

[@FranciscanGypsy]

This video had me crying. I struggle with my POTS , EDS, MCAS, CCI, and AAI symptoms every day in my job as a nurse because my patients need me as they struggle with their own invisible illnesses. Things just seem to get progressively worse, but, somehow, this talk is what I needed to hear today

[@ItsMeSadeNYC]

Same. You mentioned the exact thing I'm trying to get tested for- EDS. Were you officially diagnosed with EDS or did they just call it hyper mobility (in my case), also by what type of doctor? Thank you.. I just looked at your channel..nice! I've been trying to get a pod cast off the ground for 2+ years. I will check yours out!

[@jamesbriggs5740]

Thanks for telling our story. I have fibromyalgia and nobody understands the constant pain. Kathy B.

[@Blommetje]

Thank you for telling this.My son is suffering ME for 24 years now,but still no hope. It's unbelievable people dare to say it's a fake desease!!!!!

[@jessd956]

Have you heard about neural retraining like the Gupta Program or DNRS? Helping many people.

[@bobtaylor170]

Lilith boo, I recommend that you read Hillary Johnson's, "Osler's Web." The book was published in 1996, but I swear, it's as relevant now as it was then.

[@vivala7547]

"I'm a perfectionist. I'm a private person. I was terrified of it." And this is exactly how I came to write a blog about my life with Lyme Disease. Lyme does REQUIRE you to let go of many things. It is SO comforting to hear that you have a similar experience. It took me seven years to talk about it and I am grateful I have.

[@KathleenJean53]

Viva La it seems now, in the thick of my battle with Lyme, I am faced with letting go of people in my life that do not support me, or have fatigue from my suffering and I pretty much suffer in silence so I consider them beyond shallow. It is the ultimate smack in the face to someone who has lost so much, hopes, dreams, work, a life all put on hold indefinitely. And then a friend or loved one will say something unkind, unfeeling, like I should be over this by now, or I am a sour puss, or I don't go anywhere any more or gee, you say no a lot lately. Yes I say no to almost everything these days and do only what I feel I can or want to. Now when you quit work that raises all kinds of eyebrows for now I must be on the dole or some kind of freeloader. We are quite sick right now and don't need to worry about what anyone else thinks, though we know they are quite ignorant and lack compassion we are too tired to explain it to them again and they are never really listening anyway.

[@vivala7547]

Kathleen I share in this experience with you. Only recently have I had minor relief that's allowed me to be even remotely "social" (but the restrictions that Lyme places on being social is a bad joke and wildly misunderstood by most people) so I spend my time and expend my effort where I can as a Lyme activist. I know it's isolating but there are people out there who actually get it.

[@KathleenJean53]

Viva La Thank you for your kind response, yes activism is the best way to channel your life force once you feel that you are able. I have just begun to think about activism and will be participating in an upcoming conference. This illness has driven a wedge through my significant relationship and that has brought better understanding to me. The one gift of all this is all the time I have had to think about everything and really think about myself for the first time in a lifetime of caregiving for other people. That has been the beginning of my transformation. Maybe I will become the butterfly after all this time.

[@vivala7547]

It's funny that you say that. The more I talk with other Lyme patients the more I find that MOST of them feel that Lyme acted as an attitude adjustment/ life evaluation tool. I am the same. It's interesting that good things can come of such debilitating, undesirable circumstances. What conference will you participate in?

[@ambergypsy9]

Viva La - that is such an interesting comment. I have personally been feeling this myself but have never seen/read it articulated this way. I feel like I am being spiritually recalibrated in my Lyme disease journey. So much has fallen away and so many people have slowly disappeared. I suppose every severe illness makes us question life, our mortality, the people around us, what we do, how we do it and what we can no longer do. A definite time of fighting, but also one of acceptance & surrender as to where we are with this illness. It's been a very physically and emotionally challenging illness to have in so many ways. Thanks for your words x

[@carasun2499]

I'm thankful for these people speaking to other people like this cause this is the only thing that keeps me going

[@loristoney7052]

Very powerful Emily. I am so very sorry about the loss of your father. Senseless and tragic. As a South Carolina mother of a 16 year daughter battling extremely severe neuro Lyme and co infections for the past two years, I have spent countless hours researching these illnesses, because the general medical community was unable or unwilling to help her. I still can't believe that we have been put in this position. Her father and I are both attorneys, educated people. We have good insurance coverage. And the terrible, irretrievable, soul shattering things that have been said to my child in the course of dealing with doctors who think "do no harm" means "do nothing"! "There is no Lyme in South Carolina." Really? Dogmatic thinking has no place in medicine. They were willing to watch her die and do nothing, saying that it was all in her head. Smug and smiling they sent us home with a child who was seizing and passing out, going blind and deaf periodically, losing all feeling from the waist down, delirious with an infected brain. Surreal and horrifying, not just for us, but for everyone out there suffering with fewer resources, without an advocate, or just with out any luck whatsoever. When her illness reached such a peak that I didn't think she would survive intact we had the amazing blessing of finding a doctor who started her on a regimen that was life changing, life saving. It is still a long road we are on and I wish I knew when her suffering will end, but at least she has a fighting chance. Things are changing, but it just isn't happening fast enough for so many sick people. Thank you for your video.

[@Gpacharlie]

Tears and an aching heart for you and your girl. Some good must come from all of this.

[@NancyLynn]

Dearest Lori, I just wanted you to know how sorry I am for your family and especially your beautiful daughter. I will say a prayer for all of you and hope that doctors start to take this disease more seriously. Please know that although I am a stranger, that my heart truly breaks for you. God bless

[@jennyplatypus8961]

What is the name of your daughters doctor? Hope she is improving!

[@reacheb]

Wow. That quote strikes a chord. We were also told "there's no Lyme in South Carolina" - nevermind that, a.) That's not true, and b.) My dad grew up in Massachusetts. Where are you in SC? How is your girl doing? Feel free to reach out to me on Facebook: Emily Reach White. I'm the only one :)

[@croftstoney5475]

Richard Horowitz. He saved her life. Plain as that. We are very fortunate.

[@prairiemomof2]

Thank you for speaking up for those struggling with invisible illness. Your father would be so proud of you.

[@maryelnelligar9503]

My 17 year old Son is fighting chronic lyme. He has a PIC line in and is receiving infusions of antibiotics as the oral dose seems to be doing nothing. Everyday he fights pain,headaches ,light sensitivity and crushing fatigue My heart breaks for him. His life is just starting and he is missing out on so much. I have invisible diseases as well , Sjogren's and POTS but I'm 52. I had a youth. People are so dismissive of our illnesses. They think I have transferred my "Hypochondria" onto my Son. Sometimes I wish I could give these people a chance to see how real our pain is. Spend a day ...just one in our shoes and you will NEVER accuse us of the rotten ,careless things you do. We are warriors!

[@pureone26]

Many people with Lyme have POTS xo

[@kidcitylynnwood6324]

I don't believe in hypocondria, I believe it's just what Drs say to make themselves look better.

[@MissChrissyM1]

Mary El Nelligar hi dear. My heart breaks after hearing your story about your son. Could you tell me exactly how he was finally diagnosed? What kind of pain does he have and how would you describe it? Thank you. Is he doing any better now?

[@kevinoneill1776]

Emily, your father would be so proud of you! Thank you so much for sharing your story, you have helped more people than you know. I love when you said, "If everything you've worked for has fallen away in an instant have the courage to let people see you as you are and not as you wish you could be." This is so incredibly profound! I believe that many chronically ill people feel they have lost everything in an instant. I also believe that many of us constantly try to be who we wish we were, and doing so often comes at a great price. Again, thank you for sharing your story in such a touching, brilliant way.

[@Gpacharlie]

I decided to go out 'as is'. I think I scared people.

[@glauciamsq]

I am a brazillian medical student and I suffer from two chronic illnesses, one of them invisible. Your talk gave me even more courage to tell my story and help my future patients with these illnesses to get the best care possible, and tell their own story.

[@Gpacharlie]

This type of suffering will make us bitter or better; we choose. Your view of yourself through your dad's eyes is wonderful. A dad can be in constant suffering but still have his little girl's happiness as his top priority.

[@rycariad]

Absolutely amazing and profound… thank you so much for this. It has created a crack of light in my dark world of ME and Fibromyalgia.

[@sketch__5972]

One day the condition you have will be fully recognized.

[@keirfarnum6811]

Sketch __ Fortunately it is happening. The NIH is now doing research. It is now being researched by many researchers with top credentials.

[@32446]

I’m also in that dark world. I have hope.

[@dawnmariedawnmarie5918]

Im a 50yr old have Fibromyalgia Osteoarthritis bulge disc nerves pain sciatica but 15 years ago I was told it’s in my head finally got help with pain management and was able to finally get out of bed n work n starting taking care of others. Now problem with pain meds caused reduction bc Drs are afraid to help those in need so I’m back to square one and will be on welfare n won’t b able to help others or play with my grandson now. I don’t understand what’s wrong with this world I feel judged n put into a category of drug addiction which doesn’t make sense bc I never abused my meds I worked I paid taxes took care of my family n helped others yeah it took me longer n I was always late everywhere I go but I did what I needed to do and hobbled along so how is that like a drug addict Pain is now another part of racism! What’s wrong with this world? What happened to hope help love caring courage safety truth equality to all humans WE ARE ALL LIVING BREATHING HUMAN BEINGS HERE ON EARTH NO MATTER WHAT COLOR SHAPE RELIGION OR HEALTH CONDITION!!! So not fair for the bad to ruin it for the good! GOD HELP US ALL!!

[@vanessaking7073]

Hi

[@janpos9435]

I have Lyme, my niece has Lyme, and many others in my family. My niece and I have (had) it bad, I am much better , my niece isn't. I talk about Lyme every chance I get to bring about awareness, but I do feel the stigma.

[@richardhentzell9111]

just diagnosed this year and have lost and gained many friends...bravo

[@DHT2023]

Losing friends (even family members that feel like friends ) ; is quite crushing indeed . It’s amazing to see how much your friends and love ones can’t be bothered .

[@Gpacharlie]

Have we been adding insult to injury for all these decades? Have millions suffered under our eye rolling exasperation? Or are there that many more people suffering now? Does it matter, or do just we start today with our own awareness and a tenacious advocacy.

[@Dancingstarheart]

I hope that you are approached by many medical colleges, to speak or give a short course for medical/psychiatric community. This would help so many millions of people suffering from various Invisible diseases that are not easy to diagnose. I have had relapsing/remission Myalgic Encephalomyelitis (ME) since age of 15. Had this for over 25 years, 5 years ago got lymphoma (ME has higher risk of this along with cardiac problems). A immunotherapy made my tumors disappear. I experienced such a disparity of treatment by friends and family compared with the 2 diseases. ME has devastated my life and has inhibited the lives of my husband and children, but it was the cancer that people rallied behind and then they disappeared once cancer was gone. But my health continued to deteriorate with ME. I so appreciate your efforts since those with Chronic Lymes is like a mirror to ME. Thank you for passing along the message of COURAGE. It has touched my heart.

[@reacheb]

Dancingstarheart It's interesting that you mention that. I was working on a PhD. in medical humanities before I quit to pursue storytelling / filmmaking, and I often thought that I'd love to teach a course at a medical school. If you have the time and ability to read, you should read some of Oliver Sacks work, particularly The Man Who Mistook His Wife For A Hat, Hallucinations, and his classic, Awakenings (it's a story about a rare form of encephalitis). Dr. Sacks has such empathy and understanding of neuroimmune disorders...and such a rare willingness to listen to and be fascinated by his patients and their experiences. I think that you'd find his work inspiring.

[@Dancingstarheart]

Thank you for the book recommendation. I have added it to my reading list. Have trouble reading these days, but I keep plugging away. :)

[@howardjohnson8980]

Try helping anti-nmda receptor patients. This is all immune induced because of pathogen load throughout the body. Mainstream science wants to keep this in the dark.

[@Dancingstarheart]

Howard Johnson Hi! Thank you for that information. I would recommend reading Plague by Kenneth Heckenlively and Dr. Judy Mikovits. There is some info that may explain why the anti-nmda autoimmune disease and associated tumor develops. And I agree that the government science community is trying to silence this information. That book gives a specific example of what has happened to several researchers. Mikovits is a top HIV and cancer scientist.

[@Andrescastel]

Wow this hit me hard. Can’t stop crying. I’ve been dealing with an invisible chronic illness for 8 years, all on my own. I’m still here fighting though. Sending blessings to anyone dealing with an invisible chronic illness. 🙏🏼

[@bethbeyerabbott7492]

Having multiple chemical sensitivity, I can totally relate to your talk. I've had medical personnel tell me I am neurotic and not ill. I've had family members roll their eyes. After years of feeling like my illness was a personal failure, I finally decided that I knew it wasn't in my head. I have found alternative practitioners (even some MD and ODs) who "get it." But it took a huge investment of effort on my part. So if you have one of these invisible diseases, trust your inner knowing of what you need. Seek until you find the help you need. Never give up. You are worth it!

[@bethbeyerabbott7492]

Do's...a touch of dyslexia :-)

[@Gpacharlie]

Yes, Yes, and Yes.

[@lisausa1297]

I have Multiple Chemical Sensitivity too and this talk was so relatable.

[@bobtaylor170]

I'm much better now, but when I was in my mid and late twenties I had terrible multiple chemical sensitivities. The disease is as physical as a plane crash.

[@banzobeans]

7:44 "We don't create [these illness metaphors] to comfort the sick, we create them to comfort the well."

[@Wendigo_skull]

I'm so glad I found this today. After 13 years of Neuro work-ups I discovered in Feb of this year that I have Lyme's Disease, Bartonella, Bebesia, and RMSF. This semester of school has been a train wreck because people do not understand what it means to have illnesses like these. If I had any other recognized disease, it would be easier to get the help and leeway I need to excel. But I don't look sick when my pain flares so bad I can hardly walk. I don't look sick when my eyes refuse to focus for days. I don't look sick when the die-off wreaks havoc in my brain and every pleasure, hope and motivation I have are stolen from me for days while my body fights to clear the toxins. A simple google search tells you to take antibiotics for a few weeks and all will be well. I wish that was the case. A little understanding goes a long way.

[@Gpacharlie]

Have you considered doing a series of dramas, not unlike a Hallmark type of movie or show, for each invisible disorder? Lupus, Lyme, MS, Fibro, EDS, ALS, CRPS, SCI, etc....? It could have a real Twilight Zone spin, as in "doesnt anyone believe me!!??"

[@bzba1358]

Chuck W great idea let the wake up in one of our bodies or is that too cruel haha

[@faeryphoebe1]

Add Sjogren's also.

[@thegraveyard1858]

Chuck W THAT SOUNDS AMAZING PLS SHARE THIS IDEA

[@keirfarnum6811]

That makes a lot of sense. Culture and art is how we change how society thinks. As one poster noted, MS used to be called “hysterical paralysis” and it wasn’t until the new CT scan showed the plaques in the brain that it began to be taken seriously and it was the publicization of the March of Dimes that brought awareness and acceptance.

[@bobtaylor170]

@@keirfarnum6811 , one tortured soul who actually had MS was forced to spend 17 years in a state psychiatric hospital.

[@dbartelini44]

Wow God bless her she is saying how we all feel ..This illness is so unrecognized and people need to realize this is a bad illness and we suffer so bad

[@MissHaotic]

I have lived with an invisible illness for almost a decade. It impacts my cognition, emotions and body in devastating ways. I am suffering both the illness and the treatment from the doctors and society just like this woman had with her dad. This year I have been diagnosed (after almost a decade) with myalgic encephalomyelitis. I’ve been through many dark times wishing that I was dead, but I still have hope for the cure.

[@moua0067]

I have Me-SEID (formerly known as Me-CFS). Im 35. I am going thru hell. No mainstream doctor cares. Friends dont understand. I hate laying in bed 12 hrs a day. I hate this perpetual hangover/flu/cold/sore throat/brain fog/lethargy. I look "normal," so when I tell people, they dont believe me. Cancer is horrible but cancer patients get treated better than me. I just wish I was dead sometimes. I have to take 20 supplements a day. I cant work full time. This is not a life I would wish on anyone.

[@danyellow7857]

I'm 27. I have ME, for 7 years now. I have lost so much in my life. I'm sick of people telling me it could be worse, you could have cancer. No one would say something like that to someone with cancer. I wish I had cancer. Or one of the few illnesses that people give a damn about. But if I say that to someone who doesn't understand I'm horrible for saying that. Hurts so much. Feel so lost. XxX

[@danyellow7857]

Also suffer from a combination of other medical issues. Again people struggle to understand them as well.

[@moua0067]

catothewiser YES Im sure. 18 healthcare practitioners, $10k sure.

[@pureone26]

I totally relate. I had CFS 15 years ago diagnosed, now re-diagnosed as Lyme etc. But Lyme not even recognised at all in my country, at least the USA is bit ahead on that (not enough though). Best wishes xo

[@howardjohnson8980]

Lyme can cause Lupus. Most Auto-immune issues are pathogen based, which metastasizes physical and psychological problems, sometimes your own antibodies attack your NMDA receptors.

[@katiie7]

Many people with cancer or who have had cancer admit over and over that ifs much easier to deal with than Lyme. That they would never wish Lyme upon their worse enemy. Dealing with Lyme along side many other co infections viruses running wild within me i do wish i had cancer, because atleast I would probably die sooner. Sorry for saying this outloud but if you were in my shoes you would understand why. I need to get better to change this for other people. Laying in bed after sleeping for the past 48hours it seems impossible. Impossible to even take a shower right now lol. Grateful for people talking about this like you💗

[@sisterclare1]

Here's for all the people who have Multiple Chemical Sensitivities and EMF sensitivities like me in the world where their doctors have no clue as to what to do for them! I have suffered from these things for almost 30 years now, and am sensitive to WiFi. Yes, I look normal. There is a heck of things that I cannot do but I look normal to people and my family. One daughter just recently said that I need to get well, start doing something to snap out of this!! Tell me what it is and I will do it! Emily is spot on with this TED talk.

[@rosemarysromance]

thank you for this - you hit it on the nose - its how we all feel. abandoned.

[@sophiatealdo9680]

The Story of 'Lyme 'ends here - let the Healing for All begin - and so it is-Blessed it Be.

[@kathleensutherland6593]

So many good points, but having a recognized disease is no picnic, either. And sadly, yes, there are people who will tell cancer patients that they will get better if they want to. Or shun you, etc. I admit it's worse with unrecognized diseases, but many people are short on empathy and compassion no matter what your misfortune.

[@howardjohnson8980]

Also, this presentation is really good because she is talking to the audience instead of instructing or telling them. She seems genuine.

[@reacheb]

Thank you so much for that comment, Howard. It means the world to me. One of the reasons it took me so long to say anything is precisely because I didn't want to lecture or be shrill about it. One thing I can't stand recently is the proliferation of articles written by people in marginalized communities with titles like: "10 Things You Should NEVER Say to a Trans Person" / "NEVER Say These 5 Things to an Introvert" / "How You Should NOT Talk to Someone With Depression" etc. Certainly, hurtful things are said. Like "At Least it Isn't Cancer" But I think focusing entirely on rules of engagement and lecturing people on how they may and may not approach you, address you, speak to you...is the absolute least productive way forward imaginable. Or...to put it another way. I would have been thrilled if more people had been willing to stay engaged and in communication with my dad and my family during his illness...I would have given anything for that...even if they said some hurtful or misinformed things in their efforts to stay in communication. I can't afford to start setting up fences and rules for how people are allowed to approach me...

[@maureensimpson4383]

I don’t know what’s actually wrong, I’ve been disabled for nearly two years without a clear diagnosis. I just get dismissed a lot.

[@JoeHoboBro]

Thank you so much for this. I've had chronic migraine since I was very young. The schools always knew. They had drs notes. But they didn't understand. I would sit out of gym class at 10 years old and miss 3-4 days a week of school and the teachers would be very rude and act like I just didn't care or want to be there. Tell me I wasnt trying hard enough. In high school I was expelled from 5 different schools for my poor attendance even though they knew I had chronic pain / chronic migraine. They never tried to help me. Only one teacher ever helped me catch up on missed homework and acted like they understood. Mr Booth you were an angel and I still thank you today. Everything you said about stigma in invisible illness resonates with me. Everyone always said my mother was enabling me, by taking care of me when I was sick when I was young that she was babying me and she just needed to send me to school. Now my partner cares for me when needed and people tell him that he's enabling me. That I'm not really sick. That I'm just lazy and I WANT to stay in bed all day. .... No I really am sick and I wish I wasn't. I wish to God I wasn't in pain. I wish people understood. Migraine is invisible so people just decide that it's not real I think because they can't understand how a" headache " can do all this.

[@nedeljkababic5826]

I agree. It is the same with mental health disorders.

[@ANewDezign]

thankyou Emily for such an amazing presentation. I have had lyme for 23 years and only been diagnosed in the last 6 months. I am sure you no better than anyone waht this has meant to me and my life. I do advocate for lyme and you have given me the incentive to ramp it up xx

[@nicktheveganchick]

Love this video! I have Dysautonomia and EDS which are both invisible illnesses and I have been told so many times by people, doctors even, that 'at least I look good'.. Which doesn't mean a thing. I know they mean well but if only our bodies could show how we really felt.. I'm so glad Emily got up and shared her story, her journey with her dad. I know it's not easy for us, but it's also not easy for our families as well. More awareness definitely needs to be made.

[@mckayahpugh6554]

As someone with ARFID who just last week had yet another doctor decide to stop seeing me, this was very comforting.

[@gabeangel8104]

I don’t have Lyme disease but my partner and I both have M.E. and fibro and they are similarly stigmatised. Thank you for making this talk.

[@marilynbarker8255]

I can so identify with this talk. I have a jaw disorder and my jaw continuously dislocates. I have gone to the best specialist...nothing works. I can barely eat. I can barely get out of bed. I went to the hospital and they sent me home....they don’t treat jaw disorders. I have no where to go.

[@abanaabana5757]

How are you doing now

[@rasheedahkriel7184]

Look up on Caring medical on youtube! I think u may have a structural cause like CCI or AAI. Best wishes! 🙏

[@nedeljkababic5826]

I have one. Very common one. Anxiety and Depression

[@rimamcfarlane2202]

Wonderfully said and so very true, I have MCS try telling people about that. I also have FMS.MPS, and CRPS. So yes I do get all those questions and wonder if it will ever change. I too hate the "Have you tried" questions. Or you are too young to be like this....Like it was my choice to be chemically injured ( I was 32 when my life fell apart). It is sad the doctors don't know ANYTHING about "Invisible Illnesses"

[@Bl.uebird]

Finally someones talking about it, everybody deserves to know

[@Gpacharlie]

We think of ourselves as so advanced, sensitive, caring, tolerant and progressive. We as a society have an amazing ability to fool ourselves. We in the community of chronic pain are going through one of these insanities right now with opioid based pain meds. Stay strong, take courage, trust God.

[@Bl.uebird]

+Chuck W You as well😊

[@Gpacharlie]

What a wonderful statement about irony.

[@jillmcallister9660]

Thank you Emily. Thank you for sharing...my son is sick with Lyme and I will never stop advocating for proper testing and treatment, for him and all others who are sick with this terrible, invisible disease. xo

[@penelopelambson9128]

“ Courage to let people see you as you are and not how you wish you could be.” So many people with invisible illnesses are in a catch 22.... they often are the type who always try to put their best foot forward at all costs, yet in terms of their illness being validated, this does not serve them well. It only further disguises their reality and makes others all the more skeptical and judgmental. Very frustrating.

[@evie471]

This was so incredibly helpful and I will be sharing. I'm on year six of Lyme, and only diagnosed in the last month. We knew what it was from the very beginning, but it took until now for a doctor to acknowledge that the Lyme was chronic and not a "past illness." Now that a "professional" had stated what I've been saying all along, my family and friends believe me, but still no real understanding of what it means for my daily life or future. Reading these comments has made me weep - there are so many of us here with the same story. I am praying for you all, and I hope anyone who reads this knows that there ARE people out there who believe you and support you. You just have to reach out and they CAN and WILL appear!

[@marlanavanpatten7400]

Just now viewing this...wow, such truth...tears. Thank you for speaking out...

[@lisathompson9662]

my boyfriend was bite by a tick and was told that lyme wouldn't be chronic. I'm afraid for him because how can it be treated years later? does he need antibiotics again? what can help? don't want to lose him. So sorry about your dad.

[@kidcitylynnwood6324]

Look for a so specialist, take him in.

[@tube.brasil]

Excellent talk. Most doctors work by formulas they have learned. They like the cookie cutter simple solutions (they call them protocols). Once they meet a difficult diagnosis, they simply avoid the patient as a nuisance. Seldom they have the curiosity and will to go after a solution, because it takes time and is frustrating. They also just pass the hot potato on to another "specialist", but they never take the time to speak to each other.

[@holaizzy]

"We are here".. Encouraging words in the life of a Lymey.

[@louisebretland-treharne8904]

I am being investigated for rare neurological disease and was told at least you haven’t got cancer. I had a cancer diagnosis-my womb, tubes and both ovaries removed in August (2019), I got told keep a positive mind or my friend-relative had worse cancer or treatments! Long story surrounding original psychiatric diagnosis (took 20 + years for eventual scan showing abnormal brain changes and measured organic cognitive impairments). In a nut shell, visible and invisible, and rare or well known life limiting or life changing diseases, makes no difference as the problem is with individuals and suffering caused from cruel stigmatic prejudice, isolation and loneliness risk, and unnecessary and cruel suffering by human beings -permission to be human open to all of us and mistakes inevitable, but ABUSIVE BEHAVIOURS A LOUD NO! Thank you. 💛💜🌟

[@yager6627]

Thank you for sharing your testimony!!

[@krissyra9202]

Thank you for this. Sharing your story, and your dad’s, is essential for change. I have Sjögren’s, a common autoimmune disease that no one has heard of, and people constantly ask if I’m better. It’s frustrating. I’m sorry for your loss, But I’m sure your dad would be so proud of you!

[@rebekahkasper953]

Krissy Ra I know this is an old comment, I just wanted you to know that someone out there does know about your condition and how challenging it is! It is one that my doctor tested me for. I did a lot of research about it and if nothing else, please know someone “gets it.”

[@krissyra9202]

Rebekah Kasper, thank you! I hope you have found answers for your symptoms as well.

[@dolphin92gl]

Brilliant talk, I would love to raise awareness on vestibular disorders its so debilitating everyday and it's a poorly understood condition

[@linaadam4127]

I wish the minster of health should listen to your story and change many polices.

[@KathleenJean53]

Thank you, thank you. We are here.

[@fringedgentian444]

Thank you, Emily, for telling your story! My husband and daughters can relate :-(

[@lorahargrove9710]

Wow thank you for speaking out for us all keep going keep speaking

[@lenalena1683]

Instead of saying: "We don't know what's wrong with you", doctors keep saying "there is nothing wrong with you, it's all in your head". Yes, sure, I'm perfectly fine then.

[@cathyywaski2208]

I wish I had the opportunity to explain this while I had the time yet my body and brain are broken. my kidneys, which hurt when I first got sick as a ten year old girl, I feel, are failing. now at fourty five. yet no one takes me seriously. I am trying to get better, yet I feel valkeries calling to vallhalla. sorry all.

[@Gpacharlie]

God is in this with us.

[@kidcitylynnwood6324]

That is a lovely thought from an awful illness.

[@fabulousdolphin4221]

best wishes Cathy.

[@bobtaylor170]

Believe on the Lord Jesus Christ, and you will be saved.

[@healthteaspoonie]

and 6 years later were still having the same issues.I have cancer pain. but I have never had cancer. That Is the only way I can get anyone to understand that I indeed have chronic pain

[@lisadl1687]

Great woman of courage!

[@tamaragenar2636]

I love you for this ...thanks

[@RoniiiB]

This is really really good ❤️ Bring awareness to diseases other than CANCER ‼️

[@mariah2765]

thats exactly what I've been told!! "At least it isn't cancer"

[@MrShark-no3bq]

This is so sad but true😪

[@tamaragenar2636]

Support...is nessecery..i did not get it ..so im fighting becease i care about al ilnesses i was in care for 15 years saw it all...had respect for all...Nobody was there for me...only me...and im almost there ...keep your head upp and believe in yourself ...thats for all people fighting alone

[@stephaniehuurman2149]

Thank you thank you thank you 💜🕊💪🥰

[@greatnews4041]

If you have cancer people will start businesses to attract business to help cancer patients. A person with cancer can be helped, they are treated like royalty, their house is cleaned without charge if they ask. Lyme patients do not. My house hasn’t been thoroughly cleaned in several years because I cannot find help. Why not help all people with horrible debilitating diseases? I have only found that children with Lyme are given assistance with such things as specially designed wheelchairs. This does not help her parents pay for their own Lyme illnesses. It’s better than nothing, but severely lacking.

[@kelviannaepperson3677]

I have Cerebral palsy it is mostly treated in children but there is no cure. There are different forms some affect all parts of the body, one side, arms or legs. Mine affects my legs I am able to walk but it is difficult. It is sad that there's not too much research and help for adults

[@Zxouf873]

I have hydrocephalus, i feel so alone and invalidated...

[@SweetiePieTweety]

I cried at the last five minutes point

[@ronaldbarrett9513]

Good lesson

[@adamhouse8465]

So whats the treatment for lymes disease?

[@Bitachon]

*Sad that the medical community doesn't recognize it so much...*

[@janpos9435]

When and where can we see the movie?

[@reacheb]

jan pos Hi Jan - the movie streams online at VHX: getbetter.vhx.tv/

[@Khaleesi_Of_Kittens]

*Someone is WHISPERING OVER HER at **11:27*

[@FlatStella1]

so tru!

[@tamaragenar2636]

Courage

[@FlatStella1]

After saying at university I have MS. I was expelled by other students and one prof. Education right?

[@cmj5281]

Invisible illness is extremely difficult. I know from experience. I pray for the day when-Isaiah 33:24 And no resident will say: “I am sick.”🌺

[@gibsonwhite1595]

This is my stepmom.

[@JP-xs5lo]

There’s no way to explain late Neurological Lyme disease it’s a active infection that’s has to be treated period there’s no way around it and your on the clock heavy treatment that has some of the most scary reactions to the die of of disease hurts worse the getting it or having it is already devastating. There is no possible way to describe this disease that’s how complex each symptom in each part of the body multiple complex symptoms per body organ and all organs are effected. And your alone as far as getting public health care so you have to pay out of pocket for all treatments that will ruin your live really quick and everything you have known and there is no promise for cure imagine living the rest of your life that way it would ruin the life of whoever was in your life if they stay in it.

[@gianfrancofronzi8368]

We could possibly be looking at the biggest pandemic that we don't know about. I suggested that the authorities look closer at this problem, both morgellens and lime , I think they would be surprised.

[@wisconsinlymenetwork5563]

This is a short doc. that gives a hopeful point of view on Chronic Lyme disease. Angeli went on to the Olympics in Sochi this year. vimeo.com/65479794

[@reacheb]

Wisconsin Lyme Network I heard about her. I will have to check the doc out.

[@Bitachon]

*Lyme is the new Cancer*

[@tamaragenar2636]

They think i have primaire imuundifunction...I searcht for 10 years...lost everything ...even ' obsessed about it ..thats what they tell ..me what do they now...