5 Awful Realities Of Life With An 'Invisible 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.

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"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.

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.

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.

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.

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"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!

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.

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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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