But You Don’t Look Sick

But You Don’t Look Sick

But you don’t look sick…” Oh, those 5 dreaded words. There are days I want to take them as a compliment, and there are the days where it really just p!sses me off. Sure, it’s great not to look sick, but the fact is, I am! Sometimes I think it would be so much easier if I did just look sick because then others might have some understanding.

My diagnosis thus far has not come with many physically obvious symptoms. I had horrible tremors for years. Tremors that gave me severe anxiety and led me to wanting to drink just so I could forget about them. They were bad. The rest of my symptoms are unseen to the physical eye. Unseen by everyone-but me, that is. My first symptom (the symptom that ultimately led to my diagnosis) was fatigue. I was 14 years old and had such severe fatigue that that summer instead of wanting to hang out with my friends, like most 14 year olds do, all I wanted to do was sleep. My second symptom was the ever so fun “MS Hug”, which basically feels like someone is squeezing you with the tightest bear hug around your ribs and stabbing you spontaneously. It’s painful, y’all. It’s one of those pains that can get so bad that you can barely stand up straight. Then came the weight in my arms and legs. It almost feels as if you have sand gathering in the tips of your fingers and the soles of your feet. It’s unexplained weight that makes walking and lifting your arms feel funny and uncomfortable. I also often felt like my skull was filled to the brim with cotton. Sounds weird, I know….but that’s the best way I can think to explain it. My head just felt funny-constantly. There were several other weird symptoms, but you get my point-no one can physically see I am dealing with those things when they happen, which can be incredibly difficult. You don’t understand until it happens to you what it’s like to feel so bad but look completely fine. It can be extremely frustrating, because sometimes you just desperately want people to UNDERSTAND, but how can they?!

Physiological symptoms suck. Pain sucks. But, my biggest and worst MS symptoms have not be physiological. The hardest MS symptoms I have fought have been mentally and psychologically. And, let me tell you they have been some BATTLES. Talk about being at war with yourself! I can remember struggling with my feelings since before I even knew what feelings were. When I was younger I had severe separation anxiety. That then turned into self hatred when I reached Jr. High and High School, and so on. But, honestly that’s a whole other story in itself, so I’ll save that for next time.

Even after I was diagnosed I still don’t think I realized how much MS effected every aspect of my feelings. I started taking anti-depressants and anti-anxiety drugs right after I was told I had MS. I went through so many different anti-depressants. They either made me feel too low, or like I was losing my dang mind. I have been on several that made me a completely different person. A person I would NEVER want to be. I look back now at the person I became on several of the medications I was on, and I don’t even recognize myself. I said and did things I would never normally do. I became violent and would say beyond horrible things to the people I love the most. It’s amazing how the things that are supposed to help you can actually make you ten times worse. It wasn’t until after I got off of all of my medication to try and have a baby that I realized how much the medication had effected me. On my medication I had been a shaky, emotional, and miserable mess. Each day I woke up not knowing the person I was going to be. Was I going to be Dr. Jekyll today or Mr. Hyde? I honestly don’t know how my husband put up with me (but I’m so thankful he did). It’s so important to find someone who loves you-and all of the many ups and downs when it comes to having MS, but once again that’s a whole other story I could tell you.

The point is, having such an unpredictable illness is HARD. It effects each one of us differently. The symptoms vary-and all of them suck-to put it mildly! Many, many things have changed in my life since being diagnosed, but my willingness and determination to continue doing the things I love has not faltered. If anything, since my diagnosis I have become a much better person. It has taught me so much about not just myself, but others also. Having MS may not be an easy ride, but it could always be worse….and in that sense, I am blessed.

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Comments

View Comments (7)
  • tqsears
    5 months ago

    I so understand!

  • saharap54
    6 months ago

    As an MS patient for nearly 37 years now I truly share your sentiments completely!

  • Matt Allen G
    3 years ago

    “Oh Matt, you look so good!” “Yeah, well, if only I felt as good as I look because I FEEL horrible” – Typical conversation when I see someone I have not seen in a long time.

  • Calie Wyatt moderator author
    3 years ago

    I know that feeling all too well! It’s not that I want to look sick by any means, it’s just so hard to describe to others how you’re feeling. And sometimes I’m sure it’s easy for people to just roll their eyes and think we’re making it up when inside we are battling so much…Thanks for commenting, Matt!

  • DianeLW
    3 years ago

    I agree 100%! I feel that way with family and friends, every time I cancel plans with them. It happened again, today! This same group of retired friends meet once a month (started 3 months ago)and I’ve had to cancel each time at the last moment. Just no energy, I want so badly so see them, too. But I feel they just think I’ve become a recluse! I wish they could read this article. My family knows how I feel, but, except for my son, who has rheumatoid arthritis, the others really don’t get it! Thanks for your article!

  • Julie
    3 years ago

    Oh my gosh YES!
    I can practically see the eyes rolling when I am unable to go to a family function because I battled with MS all night long. It’s not that they are unsympathetic, it’s just that they don’t understand what it’s like to have pain shooting from your toes up to your thighs. It’s that they think I’m not doing everything possible to stop it. Like I want this? Ok, rant over. LOL I’m not an angry person but it sure irritates me when the family doesn’t understand that I don’t enjoy missing family functions.

  • Calie Wyatt moderator author
    3 years ago

    Hi Dianne! It is so hard living with an invisible illness. I’m so grateful to look normal, but not always feeling normal and not being able to truly express to others how you actually do feel is difficult! I hope you can share this article with your friends soon and provide some insight so that they can better understand! Thanks for commenting! 🙂

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