“I am sure you have heard the old adage, ‘Never judge a book by its cover.’ Seemingly, it’s human nature that we do. We judge people by the way they look.
Look, I get it. Before I got sick, I would have passed judgment, 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 disability or was in a wheelchair. Now I have had the unfortunate opportunity to learn this firsthand, I hope to shed some light based on my hidden disability.
You wouldn’t know by looking at me I have a terminal illness. I am a self-proclaimed ‘walking medical dictionary’ because of my list of incurable diagnosis hidden from the outside world. Hey, don’t get me wrong, I am thankful I usually don’t look like I feel! However, when you see me in a handicapped parking spot (I only use my placard if I absolutely have to), you might roll your eyes or glare at me as others have. You may even be like those who 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 outward signs that tell you I am disabled. As much as I try not to let it get to me, the judgment from others sucks and can be very hurtful.
You can’t see I have a serious genetic connective tissue disorder called Ehlers- Danlos syndrome (EDS) that causes faulty, weak collagen, unstable joints, and leaves me in 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, Dysautonomia/Autonomic neuropathy, celiac artery compression syndrome, a very severe reactive 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 Wolverine X-ray). This is causing Occipital and Trigeminal neuralgia. But wait! There’s more! 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.
You also can’t see the rare life-threatening heart condition I have called Brugada Syndrome. It’s another genetic disorder that causes abnormal electrical activity in my heart. This increases the risk of abnormal heart rhythms and sudden cardiac death.
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 buildup and inflammation around my heart. The result is crushing chest pain and I often have trouble breathing. See? Walking medical dictionary, right?
Unfortunately, there are no cures or treatment options for me because the treatment for one affects 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. Occasionally, I still struggle because I am only in my 40’s 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 to 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.”
This story was submitted to Love What Matters by Laurie Christopher. Follow her journey on Instagram here. Visit her website here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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‘My husband looked at me with tears in his eyes. ‘You have no idea what it’s like watching you slowly die and there’s nothing I can do about it.’ To the outside world, no one knew what was happening to us.’
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