Taking the 'invisible' out of invisible illnesses | Bethany Dawson | TEDxSurreyUniversity

[@chinookvalley]

My clinic told me I'm not disabled because I'm not in a wheelchair. My pastor told me to stop playing the "victim". When people in Positions of Trust attack and demean - it is worse than the illness, eating away at what self-esteem I have left. I'm dying, slowly and painfully, but no one can see it, so I just need to "get over it".

[@cbryce9243]

People we trust to be there for us, are not. Unfortunately, I have found that most church leaders can NOT be trusted in any way, shape, or form. Sadly, church people are often, the most judgmental.

[@pamelabibby8642]

my grandad used to say i wasnt disabled because im not in a wheel chair and i can talk see and hear well my grandad had learning difficulties and i have depression

[@allisonsarahbeth_]

dis·a·bil·i·ty /ˌdisəˈbilədē/ noun a physical or mental condition that limits a person's movements, senses, or activities.

[@lisagaedike741]

chinookvalley this is why I have mainly friends who also have a disability! I’m sorry people be telling you how to feel! I hope you have better people in your life now!

[@krogerfuller8211]

Being invalidated by those who should understand, can be quite the mind **ck.

[@sid2tiger6]

As someone with chronic pain, this whole video is so true, should be mandatory watching for everyone without chronic pain/illness.

[@bethanydawson2207]

sid2tiger6 this means the world, thank you! (I’m the speaker in the video!)

[@pauleboehi4091]

.Finally I have been cured of herpes after suffering from the virus for over 10years with several outbreaks, thank you @Dr_ayomide_ for curing me of Herpes for this I'm going to continue sharing so other people can be cured too, He also has medicine , HIV, DIABETES, LUPUS, INFERTILITY, CANCER,weight loss and many more which I can't mention.email:drayomideherbarhome@gmail

[@manankotak]

@@bethanydawson2207 Hi Bethany. Thank you so much for this talk. Much needed for people like us… it’s so difficult to explain to someone who doesn’t have chronic pain

[@Dermatillomaniac]

What a wonderfully presented video. Have lived with Chronic Lyme, RA, and POTS for 8.5 years. Have lost friends, job promotions, the ability to live independently, etc. Major tolls financially and mentally, severe social isolation. This should be mandatory viewing for all non-spoonies!!

[@ericasotto4595]

I may not have chronic pain, but I have an invisible illness, and I can relate to so much of what’s in this talk. I’m 16, and I have Functional Neurological Disorder. This means that my brain sends false signals because of subconscious stress that cause me to have seizure-like events, temporarily lose my ability to speak, and/or have a heck of a lot of brain fog or restlessness. For a long time, all kinds of doctors just told me that these were “panic attacks.” Even though I do also have an anxiety disorder, I knew that that was not correct. I know myself very well, so if these were somehow panic attacks, there are so many signs I would see. I fought for a long time with so many doctors before my diagnosis was acknowledged. And even now that I have a diagnosis, it’s still a hard road.

[@brennajones8296]

I have chronic migraines. I am 16. This video rang so true. I am disabled but I can walk, talk, think, speak and look normally. Every single day I experience extreme pain yet it’s so hard to express to people just what my life is like.

[@pamelabibby8642]

i can walk talk think and and speak and my grandad who had learning difficuties used to say i wasnt disabled wel i have depression due to bad thoughts

[@girishgoudapatil8241]

please come out of bad thoughts we have to live with the please be educate and fight against it@@pamelabibby8642

[@amym5062]

I also suffer from chronic and invisible illness, and some of the things that have been said to me have also been pretty awful, ranging from dismissive to openly insulting. This is a great speech to give, and I really appreciate it!

[@rozemarijnrose8031]

For months I have been trying to get doctors to believe me that my pain is real , and all the answers I get are yours results are fine , you don’t look sick / you’re to young . I finally got a diagnosis, fibromyalgia. And the reactions of the society are also the same . This whole video I was in tears , because finally someone understood what I was going through, what people who have invisible pain go through

[@cotidianastandup644]

I am a doctor's daughter and still, it took me 4 years and 6 specialists to diagnose me, and then another year to find a working treatment (for me was transfer factors) I got so angry when doctors told me I needed "a spa treatment or a boyfriend" and my symptoms would go away!

[@Mewmewblackberryyay]

I've had chronic migraines my whole life and recently got diagnosed with chiari malformation I. The words in this video is the most understanding I've felt since opening up about my chronic illnesses, thank you for putting it into words

[@bethanydawson2207]

This is so sweet, I'm so happy you enjoyed my talk and do hope your health becomes manageable xx

[@katm8895]

Thank you very much for this video! I am 36 yo and I am battling with Multiple Sclerosis. I chronically suffer with several invisible symptoms that make my life miserable: neuropathic pain, severe fatigue, “foggy brain” syndrome, and so on. It’s extremely hard to live your life with the exhausting symptoms. With the disease progression I become more and more isolated. I can’t work anymore. I can barely take care of my family and myself. I can’t smile, I don’t have energy to participate in activities. I feel very lonely in the whole world because nobody understands what I’m going through. It’s hurting to hear people’s comments, their “smart” advises and suggestions.

[@pleasebekind7056]

Hey 👋. How are you coping a year later? Is it any easier? I have multiple sclerosis too, and I'm where you were when you wrote this

[@katm8895]

@@pleasebekind7056 well, I would be happy to tell you something optimistic, but no…(

[@ilariapoggesi]

Have you tried dr Terry Wahls protocol? It's a diet plus supplements.

[@kathycoleman4648]

I was born with cerebral palsy and at 32, after a severe bout of joint pain that ultimately permanently effected my balance I was diagnosed with early onset osteoarthritis. The challenge of balancing the pain from the arthritis with still striving to do the things in life that I want to get done is challenging enough without the strange looks, pitying looks or eye rolls I get when people can't grasp that hey, I hurt. It's great to see someone speaking out about this.

[@kelviannaepperson3677]

I have cerebral palsy too and I'm 25 gonna be 26 soon. I always have a hard time walking and my balance. My knees help support my legs but they hurt too. When it's cold my legs feel like icicles about to break. I have been trying to understand why I have heat exhaustion in humidity and if anyone else has experienced it

[@kelviannaepperson3677]

I just got diagnosed with neuropathy ( nerve damage) most likely caused by my cerebral palsy

[@pleasebekind7056]

I just wish people would get in their head that "disabled" doesn't only mean paralysis. I'm sick of people judging me and thinking I'm faking because 'when she leaves the house she looks fine'

[@jaydehall9731]

Don't you love it when doctors use unnecessarily complicated words for "you actually aren't in that much pain you are just dramatic"?

[@louisebretland-treharne8904]

Impressive and naturally delivered with intelligence. Having a complex illness with at first long term psychiatric illness 1992-2013 labels(a story in itself), but 2014 showed abnormal brain changes and diagnosed with Ataxia. Currently 2019 diagnosed with Ataxia, Chorea (not Huntington’s disease), brain lesions of unknown cause with cognitive impairments, migraine and probable vestibular migraines, heart conduction problem, under active thyroid and in August 2019 major surgery for endometrial cancer. Prior to the psychiatric trap I was a qualified nurse with specialist training in neurology. Psychiatric labels as in history (now considered a misdiagnosis), but psychiatric diagnosis can’t be proved or disproved-vulnerable and scary reality, can still cloud professional opinions and outcomes, being investigated under rare disease for clarity and diagnosis of my complex illness. I walk with a rollator/walker, walk as if drunk due to brain changes, I have an overweight visible statement which open to huge stigma and wrongful presumptions (yup under 60 and overweight, but use a walker-not acceptable-nobody sees beyond needing joint mobility related problem caused by my greed and laziness-obesity. So having a walker, visible balance co-ordination challenges, a diagnosis of cancer requiring surgery does not create kinder or more accepting behaviours than the apparent invisible mental illness. I have measured cognitive brain shrinkage/lesions induced impairments, INVISIBLE but the cruelest and most disabling place of loneliness, however, cancer, using a walker, brain scans confirming organic cause for my problems doesn’t lead to people being kinder than they are regarding my INVISIBLE cognitive decline, and disabled people with or without visible disabilities sometimes less respectful and understanding than apparently non disabled people, and eager to believe their condition requiring priority care or attention. People and society maybe the problem and not so much illnesses whether INVISIBLE or VISIBLE. This is my personal awareness and not trying to trample or presume anything about disabled or non disabled individuals. Thank you, I found this talk fresh and a promising voice to represent the human voice rather than trap of disease(acknowledging and respecting pain or conditions) within reality based individualism and the collective) possibly a balanced inspired hope and permission to be human? Oops tangents, decline in editorial prowess-INVISIBLE Disability, do I apologise at risk of mixed messages-if cognitive/brain disability-should I apologise or be a constructive AWARENESS VOICE? 🤫🤭🤐shhh-thanks. 😃💜🧡💙

[@azshadow32]

Very well spoken and unfortunately true. Dealt with this attitude for over 20 years. I have had over 20 surgeries and now been diagnosed with PSA (psoriatic arthritis). It is very hard to treat because I was not diagnosed for so long. All docs should have to watch this.

[@kimberlycorley4164]

I just cried because now I understand what I'm feeling is real.

[@theodoreharvey4814]

It is real you're not alone there's so many of us.

[@ceribailey8565]

I would like to send this to every doctor I have ever met. There is such a systemic mentality in the NHS that is so quick to dismiss and ignore what people say and just think they know better because they have some letters after their name.

[@ferncurtis2437]

Wow…you are incredibly eloquent and have such a gift for public speaking. Thank you for using your voice to speak for so many of us who are suffering and refuse to do it silently just to keep everyone else comfortable.

[@Hi-wu1se]

I had a neurologist who would ALWAYS send me out of the room when it came to his final verdict of what he thinks is wrong with me. He would send me out of the room after a 5 minute ‘interview’ to talk to my parents, and never follow up with me.. He thought all my symptoms were anxiety and just in my head

[@melissadoesmakeup]

I'm so sorry you had that experience.I was told the same thing. I have CRPS in my right foot and he took his little pencil thing to my bad foot with no remorse than told me I needed to get happy. He didn't even mention a pain processing problem. NEUROLOGIST?! Try narcissist.

[@Hi-wu1se]

@@melissadoesmakeup when I saw your username I thought it was a friend of mine also named Melissa with chronic illness, but not CRPS so I was really confused for a solid 5 seconds. I actually did some interviews with a speech pathologist and hearing specialist, and they said the vast majority of their patients all had some sort of bad experience with neurologists, whether it be misinformation, not enough information or ignorance from the doctor. Which says a lot but is also almost too predictable

[@india7680]

Wow finally someone agrees with me that not all illnesses are known, researched, or studied! Guess we all have something imperfect about us.

[@jaybrewster6926]

At this point I've gotten so tired of seeing doctors because for years my chronic pain was just disregarded as "growing pains" or "stress". Only once did the doctor even halfway attempt to find out, but because the x-ray was fine, I must be faking. I'm in college now and there are days I collapse and can't get back up and have to practically be carried. The idea that no one has ever listened to me stops me from even trying

[@magsmagpie]

I have chronic pain with arthritis, extensive nerve damage and fibro. I have some mental health difficulties understandably. My conditions are diagnosed. Yet I had a pharmacist just the other day, try and tell me that my current difficulty with my mental health is cause for all my pain. Hmmm.... Debatable. I shall contest this, and I have 25 years of being a nurse, and trained in medical law and ethics to back me up. 😊😊

[@bellad.1274]

Thanks for speaking out! 👏🙂 Doctors pretending pain issues are all in your mind is an easy excuse to DO Nothing! !!! Blame the victim!

[@Hi-wu1se]

My invisible illnesses and chronic pain finally feel represented in public media

[@RAandMyself]

I hear you! Check out my film series...my real story and other patients give their perspectives!

[@Stardust_7273]

I'm 41, I have had degenerative disc disease since I was in my early 20s, as well as fibromyalgia, and then developed lupus a few years ago. A few years ago, I started walking with a cane. I am in pain and very easily fatigued. I can't stand for more than a few minutes without becoming "wobbly" and be in immense pain. I often have tims when I feel unwell for days at a time. I also spent years with doctors telling me that either implied or straight up told me that I was overrecting and/or they didn't treat the one thing I was referred there for, because I don't fit into a certain mold, so they wouldn't treat me. I spent 11 years (I kid you not) to get disability SSI because they always took my age into account first. And then the amount I was finally given in benefits was worked out to less than $1,000 a month. So I can't work, and I'm forced to live with my mom because what they give me wouldn't even cover rent. I constantly worry about the future, if they're gonna take my SSI and medicaid and food stamps when my mom passes and they deem my income from the inheritance to be over the limit I'm allowed to make on my own (which, btw, is below the poverty line). I always feel I'm being punished for things beyond my control. And I have lost friends because I can't commit to events, or I tell them at the last minute that I can't make it since I'm feeling absolutely horrible. I really wish more people understood what I go through and that I DO try and DO feel bad that I can't attend more events or do more things. I don't want pity, I want uderstanding.

[@ilariapoggesi]

I suffer from fibromyalgia and it's so true what you said as I do not look ill people do not Believe that I have Real pain especially in my legs

[@samuelschofield3170]

This is an excellent video Beth! I can't believe it's taken me so long to watch it.

[@bethanydawson2207]

Thanks Sam!

[@india7680]

Thank you🙏

[@ujjwalruhela4890]

Story of every Ankylosing spondylitis warrior....

[@cameronmcphee6827]

Literally 🙁

[@RAandMyself]

I have rheumatoid arthritis 17 years now. Arthritis warriors!

[@saahas4058]

Wonderful! So beautifully summarised. Keep it up!

[@bethanydawson2207]

Thank you!

[@saahas4058]

@@bethanydawson2207 We have recently started Spreading Awareness in India. If you could talk with Indian audience on our facebook page, it would be really appreiciative.

[@nottoday9182]

I dont have chronic pain, but I have an undiagnosed brain disorder that mimics the symptoms of being drunk. Poor balance and speech patterns, and tremors. I cant get work because everyone thinks I'm drunk and no doctor can tell me what is wrong... so I have no excuse...

[@bobtaylor170]

Have you seen a neurologist? Have MRIs been made? Whatever it is, you certainly sound as though you have a serious illness, and please, don't stop searching for help.

[@chinookvalley]

It took ten years for drs to believe me. I was accused of being a drug addict and alcoholic. What is it in humans to look for the worst instead of trying to understand and - yes - help!!??

[@chinookvalley]

@@bobtaylor170 Oft times there is no test that will show that we ARE ill.

[@girlinthesouth850]

Nailed it

[@medan880]

Maybe my father will listen to this seeing as he refuses to believe I’m sick

[@girishgoudapatil8241]

Great talk have the education about chronical illness

[@liz6034]

I was just told the same "pain processing" diagnosis. But he did not agree with a previous fibromyalgia diagnosis. Clinical notes made special mention that I brough in my labs from other doctors and specialists, which earned me a brand new diagnosis of health anxiety. I believe that the medical community is enabling a culture of suspicion and misinformation against patients. A diagnosis is made simply because you HAVE symptoms and you fit a stereotype spread though "medical educational" content on KZbin.

[@SarahKDB]

I look totally "normal" but my pain is absolutely severe and disabling. It sucks.

[@GlamiSami21]

What do you have?

[@SarahKDB]

@@GlamiSami21 I have a combination of Osteogenesis Imperfecta Type 1 and Ehlers Danlos Syndrome Hypermobility Type. I basically have weak bones (lots of stress fractures that never heal) and loose painful joints. Bad feet, back lower back, bad ribs, etc. DNA testing also showed I have Pseudoxanthoma Elasticum but I don't have symptoms...yet...Hopefully I won't go blind from that one day. ☹️

[@enjylmaryaba520]

🎯 Key Takeaways for quick navigation: 00:30 *🩺 An invisible illness, like non radiographic axial spondyloarthritis, doesn't show up on scans like X-rays or MRIs, leading to misdiagnosis and delayed treatment.* 01:23 *🧠 Chronic pain goes beyond physical discomfort, often leading to isolation and impacting mental health, with a strong correlation between chronic pain and depression.* 02:07 *🛑 Invisible illnesses, by their nature, aren't apparent to others, requiring individuals to disclose their conditions, which can lead to discomfort and societal stigma.* 04:31 *🎭 Stereotypes surrounding disability dictate narrow criteria for what constitutes as disabled, often overlooking those with invisible illnesses who don't fit societal expectations.* 07:13 *💡 Misconceptions about chronic pain, such as the belief that it's solely psychological, contribute to dismissive attitudes and inadequate medical treatment.* 09:55 *📚 Education and understanding of invisible illnesses can break down stereotypes, reduce isolation, and empower individuals to advocate for themselves and others.* Made with HARPA AI

[@Callmethebreeze902]

My body fell apart mentally and physically in my 40’s and my husband is a personal trainer and I just want to scream lack of exercise didn’t cause this nor will it fix it!!

[@ganesan6503]

A.S will stop the persons activity but with help of rheumatologist we can change the illness and live painless Through exercise (because i had also suffered from same A.S) avoid drinking coffee for life time , Good speech

[@heidivernathorbjornsen475]

May I ask why one should not drink coffee? And are there other things to avoid? TY for your advice.

[@tonimartinowen]

@@heidivernathorbjornsen475 Coffee may help reduce inflammation in most people. However, people with AS may experience increased inflammation following coffee, tea, and caffeinated soda consumption.

[@caredfor6872]

I have 2 invisible Illinois. Gastropresis and interstitial cystitis. the pain is so bad. I look normal. also I live with chronic gastritis. flare-ups feel like fire in my digestive system and a knife is cutting me on the insides. it's true I are treated like you have a mind problem if your condition is not noticeable.

[@steveeymann6374]

I typically get the " oh I have arthritis too its not that bad" it's not the same thing and it's incredibly rude and diminutive .

[@bitharothkoff]

I've considered so many times to start using a wheelchair just so people can see

[@vickimartin7601]

Mikhaila Peterson had arthritis at a very young age. Look up her story.