#5. People Constantly Accuse You Of Faking Your Illness
We’re trying to move past our illness and be productive members of society, but society seems angry at us for looking normal. Like my ex-coworker, who used to accuse me of faking my MS-induced seizures to get out of work. Or my father, whom I have worked with for the last three years. He’s watched me wriggling on the floor amidst an MS attack twice without doing anything to help. Part of him just didn’t know what to do, but another reason why he just stood there was the gossip in the building about how my seizures were just exaggerated “dramatics” (in his defense, I am a huge theater junkie). Things are better between us now, and if I collapse in front of him, he’s sure to call for an ambulance or rush me to the ER himself. Though, even that’s not safe ground: You can roll up on the emergency room with handwritten notes from every doctor from Doom to House, and the ER staff still won’t believe you have MS unless you look the part.
Young, inexperienced nurses and doctors will sometimes have MS patients tested for fibromyalgia (aka the “uncertain shrug” disorder). Or, worse: They once tested my blood alcohol levels because they thought the MS-induced slurred speech and stuttering were from multiple shots instead of sclerosis.
#4. If You Need Disability, You Might Have To Cheat The System
I still have a job, but I probably can’t keep doing it forever. For people in my situation, going on disability is often the only option we have. But, here’s how infuriatingly difficult that process can be: When I was a teenager, I had a boss whose daughter had advanced MS. It took two court cases and more than $7,000 in legal fees before she could get the money to feed her kids. The woman in question was legally blind and had no control of her left leg. Now, try to imagine convincing those same bureaucrats that you need financial help when you don’t even look “sick.”