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

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".

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

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

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.

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.

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'

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!!

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.

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!

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

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

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. 😊😊

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.

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

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

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

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

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. 😃💜🧡💙

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.

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.