Living with Multiple Sclerosis for the past two going on three years, I have encountered a lot of really horrible people who have no clue what it is, how it affects me, and why I am considered disabled. I have encountered a lot who also think it is okay to just say (or type) whatever comes to mind about me and my condition, no matter how wrong they are or how callous it really is. I have also encountered a lot of people who think they know more than I do about my body. They all say really, really stupid stuff. Like I thought long and hard for a classier word to describe the things they say but, let’s be honest, stupid is the best word for it.
Humor is my friend. Anger is my normal mood. So excuse me if my attempt to eject humor into these turns into an angry rant.
- “So-and-so that I know has MS and they aren’t disabled. They work everyday!”
Goody. What kind of MS do they have? “I don’t know.” How often do they get a flare? “I don’t know.” What medication are they on? “I don’t know.” How many times have they switched medication before finding one that works? “I don’t know.” Does their MS effect their ability to do their job? “I don’t know.” Do they draw a percentage of disability and work as much as that allows/their condition allows? “I don’t know!” So you’re telling me that because of someone who you are vaguely aware of having MS but you don’t actually know any details of their condition works, I should be able to do so as well? Even though our conditions are probably nothing alike just because they have the same name? Well, okay, but I’m pretty sure my doctors say differently so . . .think I’m going to go with what they say instead.
- You can’t be affected by the sun, you’re outside in your pictures!
Uh, hi. As cute (creepy, I mean, creepy) as it is that you went onto my profile and looked at my pictures to form your opinion, you realize going outside to take a picture takes like 3.5 seconds right? And the sun effects my condition after being in it for a while, like greater than 5 minutes. If I get too hot, I flare. On top of that, the sun gives me a horrible rash that itches and scars. I still have bumpy scars on my upper arms from being in the sun for a prolonged time 6 years ago!
- You’re just saying you have that for attention.
No, I assure you I am not. It’s not glamorous. It’s not fun. It’s not easy. It hurts, constantly. I don’t get special attention for having it. I wouldn’t wish this on my worst enemy, and they are a pretty horrible person who probably deserves at least a fraction of this pain.
- Aren’t you too young to have that? Isn’t that an old person’s thing?
Admittedly this is usually followed up by disbelief of my actual age (32 currently) and that is sweet. Otherwise, no. It’s not an old person’s thing. Early to mid 30’s is the exact range most women get MS. I don’t know the age for men but I think I have read somewhere that it’s late 30’s, early 40’s? Either way, it is definitely not an old people thing.
- Can you smoke pot for it? Do you? Do you just say you have it so you can smoke pot and not work?
Legally, in the state of TN, no, I cannot but in other states, yes. I used to before I got pregnant with my daughter and I never picked it back up. Hemp Seed Oil works for some mild relief sometimes, though. And again . . .I know no one who would pretend to have this much pain just to have an excuse to legally smoke pot.
- It’s all in your head!!!!!!!!!!!
This was first said to me by a doctor who discovered it is all in my head. Like, literally, I have demyelination in my brain and spine. This is what MS is. Other people who say this, however, often follow it up with If you just meditate, do yoga, exercise, lose weight, drink this tea, drink this protein shake, do the hokey pokey, stand on your head, rub bat dung on your head, or some other form of mystical cure I can be free of this. I'm obviously just not trying hard enough. Insert the hardest of eyerolls here. If I remotely thought any of this would work, I would have tried it already. Yoga is great. It feels amazing to move my body like that. The thing is that the next day, I cannot get out of bed. My spine feels severed at my hips and my muscles are drawn up and useless. I prefer taking care of my rambunctious 1 year old to being in bed screaming and crying in pain.
- Your fiancé is sooooooo brave.
No, he isn’t. I mean, he is. He’s brave, and compassionate, and kind and amazing and beautiful and all I ever needed in my life. However, his loving me does not take bravery. I am not a freak. I am not deformed. I am a woman who he fell in love with despite my condition and understands that it puts limitations on us. He chose to live with those limitations and continues to do so every day because he loves me.
- Why did you have a child knowing your condition?
Because I have a great capacity for love and I have always wanted to be a mother. She doesn’t suffer. She doesn’t lack. I am her mother whether it is from the bed where I can’t sit up or on my feet chasing her around. Admittedly, I need help some days more than most, but my daughter does not go without her mother.
- Maybe if you lost the weight you wouldn’t have MS anymore.
At one point in my life, I weighed 405lbs. I had MS then, just no symptoms of it. I lost 200+ pounds and am still losing (thanks for thinking I’m not though. I mean we all know what assuming does so . . .) but that has no effect on my MS because it isn’t just going to be magically cured by losing a certain pound. Oddly enough, it was losing the weight that caused me to start showing symptoms. Your brain shrinks with both age and weight loss. That triggers the damage to the nerves that demyelination causes.
- Why don’t you work from home?
Because it’s still working. My condition isn’t solved by being at home. It is still unpredictable. I still wouldn’t always be able to do my job. As fun as stuffing envelopes or selling cosmetics sounds, I would still have to put more effort into it than my body is capable of sometimes. It takes tremendous effort to put on clothing every day, wrestle a wriggly little girl onto the potty and into her clothes, and down my first round of medication a day. By the end of that I’m exhausted and in pain and I still have anywhere from 8 to 12 hours of managing my toddler before James gets home and can take over. If you added in a job, even working from home, to that, I would not survive the day. I do manage to do crafts and sometimes sell them. But I have to be on a really good medicine regimen and usually the kiddo is at her grandparents when I do this so I literally have nothing else to do.
Anyway, that is the first round of things I have to deal with on an almost daily basis from someone, either in person or online. As I thought, it turned into more of a rant than anything, but I hope it has been educational and informative. I do not mind actual questions especially when asked in a polite and cordial manner. I do mind snide and assumptions. Anyone who wants to know anything about my specific condition as it pertains to me can ask. I’ll answer, but there’s no reason to be rude.
