Telling People Face to Face that I Have MS

Most of the people I know have heard of MS one way or another. They either know someone with the disease or know of it because of me. You know, they did their research around the time that I was diagnosed. All of this being said; I haven’t really had a proper opportunity to explain it to many people. I did write a blog post about it (click here) explaining what it is and the like, but, I haven’t had much of a chance to explain it verbally. It’s a good job too because I get baffled and sometimes worry when I explain it to someone face to face, I’m afraid that I can’t get my point across.

I have no problem letting the world know that I have a chronic illness. I am absolutely fine with that. Sometimes, it can be unnerving to tell new people that I have it though. It scares me to think about how they’d feel and/or act about it or about me after hearing such heavy news. When people hear the word “chronic” they automatically assume it refers to fatal, contagious or something disgusting. Then when they hear “disease” all of the same assumptions come up. That makes it really hard for me to explain it to them without them thinking that I’m dying, or that they’re going to get cooties!

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I look at the serious side of it first; will they not want to get involved with me? Have I just turned them off getting to know me? Then I see the funny side; they think that I’m some kind of a blood sucking monster..pretty sure they’re known as vampires now, but, minor details! Or a big cootie bearing monster and with one touch they will also get MS and die an awful, painful death. It’s kind of funny really! It just goes to show how little work has been and is being done to raise Multiple Sclerosis awareness.

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I don’t mind letting the world know that I have this chronic illness, it’s when the world starts treating me differently to those who don’t have one that bothers me. Yes, I get sick, I suffer from things that you don’t, but, I’m still Karolyn. I’m not going to infect you with a flesh eating virus or anything. Sometimes when I tell people they don’t know how to react. It can be awkward at first, but it doesn’t have to be! I’m absolutely fine with this stupid disease. Its shit, but, I cope with it. You don’t have to look at me as if I have 7 eyes and ooze is coming out of my ears and nose. I promise; my MS will not hurt you!

The most obvious reaction to telling new people about my illness is one of overwhelming pity and extreme awkwardness. I dread telling people because of that reason, especially when they’re not aware of Multiple Sclerosis and what it entails. I’m not taking a stab at people here; I’m just saying that MS awareness is so low that many people haven’t a clue what it is and instantly feel unsure about me when I tell them. I get that confused look; “what do I say?” “What is a chronic illness?” “Is she dying?” They don’t make me feel very good about myself to be fair! That being said, it’s aan expected reaction, its not like I don’t presume it when I tell people.

Finally, just to reiterate; I am not a contagious freak, I am not dying, I am not a disgusting cootie monster! Just don’t make me angry 😉

Sometimes I Forget That I Have a Chronic Illness.

As weird as it sounds, every now and then I stop and think “oh yeah, I’ve MS.” I know that it seems funny, but, it’s essentially a good thing, it means I’m in good health! ..Or plain stupid!

I can imagine that you’re wondering how on earth I could forget something so real and prevalent in my life. Lately, things have been going well for me with regards my health. In contrast to this time last year I’m like a different person! I don’t know myself these days. My fatigue levels have decreased significantly, making it so much easier for me to do the everyday things that I couldn’t do before. I’m beginning to be able to do the little things that I couldn’t do this time 12 months ago. Things like staying up late, going on nights out with my friends, doing more activities and still being able to carry on for the day (or most of). It’s still a bit surreal though, trying to picture myself doing all of these things when not so long ago just thinking about doing them made me tired.

This sounds all good, but, when that “thought” crosses my mind and the feeling sinks in, I come crashing back down to reality. I do have MS, it hasn’t gone anywhere. It’s the little reminders that can be the worst. I’m visiting a friend’s house; I start to feel too tired to drive home, so I want to stay the night. That’s all fine and dandy, but, then all of a sudden it clicks. My medication is at home, I’m not as normal as I thought for that split second. Yes, I could take the meds when I get home the following morning, but that’s not my point here. What I’m trying to say is that I sometimes forget that I even have simple vitamins to take because of my MS, let alone my treatment medications. I know that lots of people are on medication, different tablets for different things. But, this time 18 months ago I was on absolutely nothing, and now all of a sudden, in order to stay “well” I need to pop a few pills every morning. It’s a weird feeling, forgetting something that is a big deal.

It can be pretty bittersweet, forgetting something so serious. For example, if I wanted to do a certain thing that entailed getting a medical, would the fact that I have a chronic illness mean that I’d fail on site? Or maybe I’d have that go against me and ultimately cause me to fail the test? Small things like that slip my mind sometimes. Don’t get me wrong, I’m not going to drop my chin and sulk about it. If it’s not meant to be it’s not meant to be. They just missed out on having an amazing person on their team because they thought that she wouldn’t be up for anything due to the simple fact that I have a long term illness. You know, because I’m awesome and stuff!

Don-t-hate-me-cuz-I-m-AWESOME-penguinangel-24752236-499-431It can suck to be brought back down to earth and be reminded that I do have Multiple Sclerosis. But, this disease is clearly not affecting me badly enough for me to be sitting in a dark corner and crying about my life. I’m doing what every “normal” person is doing. Perhaps I have to move slower than your average “healthy” person, but I’m still doing the same thing as them. I’m still capable of driving, going out and having a good time, going abroad, exercising etc.

Life with a chronic illness isn’t all that bad for me at the moment. Naturally, I have bad days where everything isn’t so great. For the most part though, I feel “healthy”, as healthy as I can be anyway. It’s nice to act like a normal 22 year old, even if it’s just for a few more weeks or days. I plan on enjoying every bit of it and forgetting that I have MS for as long as I can!