judge a book by it’s cover” but seemingly it’s human nature that we do... judge people by the way they look.
Look, I get it. Before I got sick, I would have passed judgement too, if I saw someone who looked like me parked in a handicap parking spot. Not because I am rude, but because I didn’t understand what a hidden disability was. I always thought a “disabled” person had visible signs of a disability or was in a wheelchair. Now that I have had the unfortunate opportunity to learn this first hand, I hope to shed some light based on my hidden disability.
You wouldn’t know by looking at me, that I have a terminal illness. I am a self proclaimed “walking medical dictionary” because of my list of incurable diagnosis that are hidden from the outside world. Hey... don't get me wrong, I am thankful that I usually don’t look like I feel! However, when you see me in a handicapped parking spot (which I only use my placard if I absolutely have to ) you might roll your eyes, or glare at me like others have. You may even be like those that have said something rude or left a nasty note on my windshield. Unless I am wearing my cervical collar or using my cane, I may not have any outwards signs that tell you I am disabled. And, as much as I try not to let it get to me , the judgement from others sucks and it can be very hurtful.
You can’t see that I have a serious genetic connective tissue disorder called Ehlers- Danlos syndrome (EDS) that causes faulty, weak collagen, unstable joints and spine and leaves me in daily chronic debilitating pain, In addition to this, EDS (along with my autoimmune disease) contributes to a series of comorbidities I have. This has caused everything from multiple organ failure, stomach paralysis, and intestinal failure ( my large intestine is now removed) as well as Postural Orthostatic Tachycardia (POTS),Dysautonomia/Autonomic neuropathy, Celiac artery compression syndrome (MALS), a very severe reactive hypoglycemia/insulin resistance and a rapidly degenerating spine.
I have had several cervical spine fusions and now sport titanium rods and screws that go from the base of my head to my mid back (as shown in this sexy Wolverinea X-ray). This is causing Occipital and Trigeminal neuralgia. But wait! There's more (reminds me of an infomercial haha), The weight of this fusion on my already unstable, weak spine will cause the need for more surgeries in my future, adding to my now 15 major surgeries I have already had.
And just to round things out, I have Lupus that takes a back seat to a rare autoimmune disease called Behcet’s Disease. This is a form of vasculitis that causes inflammation of blood vessels. Since we are made up of blood vessels this affects my entire body. My cardiologist believes this is what is causing fluid build up and inflammation around my heart. The result is crushing chest pain and I often have trouble breathing. See? Walking medical dictionary right?! :)
Unfortunately there is no cure or treatment options for me because the treatment for one (especially my autoimmune disease) effects the others. My husband explains gently to those who ask about my health “ sadly she doesn’t get better from this, she ultimately dies from it”.
Generally, I have accepted my fate, but occasionally I still struggle because I am only in my 40s and feel like I am 90 ;). Losing my health has given a new perspective and appreciation for the time spent with loved ones and the memories we create . I can’t change my health, but I do hope to contribute to hidden disability awareness.
My husband thinks my reaction to their judgment should be a 5-10 minute lecture complete with handouts explaining all of my medical conditions, surgeries, and the likelihood of my outcome, so they can feel as bad as they made me feel from their judgment. However until I get the courage and energy, here is a public service announcement that not all disabilities are visible.
