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5 Awful Realities Of Life With An 'Invisible Illness'

By:: Cezary Jan Strusiewicz; Dani Fryling

July 14, 2015

5 Awful Realities Of Life With An 'Invisible Illness'

If you have ever had the plague, no one accused you of faking it to get handicapped parking for your oxen or whatever. Not the case with my particular disease. Hi, my name is Dani, and I suffer from multiple sclerosis, a painful nerve disorder that occasionally shuts down parts of my brain and scrambles my immune system. You wouldn't know it when you look at me, though, because my brand of MS doesn't confine me to a wheelchair or crutches. On the outside, I appear pretty healthy. You would think that would be purely a plus. While I sure won't say it's worse than being wheelchair-bound, it definitely has its downsides ...

5 People Constantly Accuse You Of Faking Your Illness

Imagine you have "invisible" multiple sclerosis, and you're coming out to your car, which you parked in a handicapped spot, only to find the sheriff blocking it. He tells you that he thinks you stole your handicapped placard because he just saw you walk into the store instead of crawling in there like a Walking Dead extra. That's what happened to Sherri Connell in Littleton, Colorado. People don't realize that handicap placards/stickers for MS sufferers are there in case we start having a seizure or something, which could happen at any second.

"Not only did you park in a handicap spot, but, now, you're black-out drunk? Double Whammy Citation!"

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.

"MS, huh? Where's your helper monkey? Hit the bricks, pal."

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."

"If she's blind in that eye, why did she yell when I poked it?"

That's why social security lawyers straight-up advise us to, well, cheat the system a bit. I once attended a seminar organized by the National MS Society, where they had a lawyer explain what not to do when applying for benefits, such as, "Don't apply online. It shows that you can still type and have a 'work skill.'" The lawyer also advised to "come in to your interviews and court on your worst, sickest day." All of that -- despite us having a disease and symptoms that should be covered. The problem is that you don't win disability with the severity of your condition: You win it with how disabled you look, like some twisted, reverse beauty pageant.

3 MS Is Most Difficult When You're Young

MS is like an erection: It's hardest in your 20s. When you hit middle-age, you have all kinds of support groups, a family, some savings, etc. And if not, there's at least Social Security. The problem is, to get anything out of it, you first have to pay into it with years of taxes. If you're 45 years or older, you are likely fully covered. Anyone younger is fairly screwed. To make it worse, it's estimated that Social Security will be gone by 2037.

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But, at least those baby boomers can live slightly more comfortable while telling you how lazy your generation is.

For emotional support, college-aged folks can mostly only rely on their friends. Your young friends might be hilarious at the coffee shop -- oh, Ross, will you ever get the balls to tell Rachel how you feel? -- but, imagine explaining to a 20 year old why you look perfectly normal and still stutter, slur, wear an eye patch, and get insane mood swings. They'll think you're a drunken pirate, and that's only fun for a year so, tops. College freshmen can barely understand Cheech and Chong sketches and freak out at the responsibility of owning a hamster -- not everybody is up for a friend with MS.

2 We Know Shockingly Little About Multiple Sclerosis

Modern science has no conclusive ideas as to what causes MS and its attacks, though they have a buttload of wild guesses, including stress, losing close friends/loved ones, Vitamin D deficiency, smoking, bacteria, or just "gettin' shit on by life."

"Our study has found a strong link between the time between Netflix downtime and MS attacks."

It doesn't help that it's nearly impossible to find a group of people with MS who have the exact same symptoms. Double vision, tremors, paralysis, chronic depression, chronic pain, an inability to learn and retain information, and sexual dysfunction -- it's like a bingo game in hell. And not only can you start off with any random slew of those symptoms, but, at any time, without warning, you can develop brand-new ones.

"Dammit, my stigmata is flaring up again."

Every medical issue has to be checked out for possible MS. Digestive problems? Nerve damage? Arbitrary break dancing? Spontaneous telepathy? Who knows? Could be MS. Let's do a bunch of expensive tests!

1 The Rug Can Be Pulled Out From Under You At Any Time

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I live in a world of constant uncertainty, not knowing if my insurance company will drop me after the next election or what. My dad is a Republican who supports "Obamacare" because it made it impossible for companies to deny coverage based on preexisting conditions such as MS. Thanks to that and Medicaid, my MS treatment now costs me a grand total of $0. Without both programs, it would cost about $24,000 a year for the next ... all my life. There's no way I could afford that. That's why every time the GOP tries to repeal the law, I feel like I'm sitting on hot coals while waiting for the outcome of the vote.

Incredibly, "pulling yourself up by your bootstraps" is not an effective MS treatment.

I don't expect anyone to read this and start hearing sad violin music in their heads. People with MS are not looking for pity. All we're asking for is that the government help some of us so that we don't end up on the street because of our disease, and, hey, credit where credit is due: That's what they've been doing so far. And they will continue to do so if more people know that folks like me exist, and that we are trying our damnedest to live normal and independent lives.

You fight an invisible disease the same way you'd fight an invisible monster: Throw a bucket of paint on it, so everyone can see what they're fighting.

To learn more about multiple sclerosis, visit the National Multiple Sclerosis Society website. Danielle Fryling is an MS advocate, writer, photographer, and soon-to-be Australian. Cezary Jan Strusiewicz is a Cracked columnist, interviewer, and editor. Contact him at c.j.strusiewicz@gmail.com.

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