A Letter To “Normals”
Having MS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident , most people do not understand even a little about MS and its effects, and of those that think they know, many are actually mis-informed.
In the spirit of informing those who wish to understand……
These are the things that I would like you to understand about me before you judge me….
– Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
-Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time , in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy, that’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say , “Oh, your sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome to.
Please understand that being able to stand for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes ,or an hour, and just because I manage to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.
-Please repeat the above paragraph substituting “sitting”, “walking”, “thinking”, “being sociable” and so on…. it applies to everything. That’s what MS does to you.
-Please understand that MS is variable. It’s quite possible (for me, its common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying “But you did it before!” if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.
-Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes… may frustrate me to tears, and is not correct….if I was capable of doing these things , don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.
Another statement that hurts is, “You just need to push yourself more, exercise harder…” Obviously MS deals directly with muscles, and because our muscles don’t repair themselves the way your muscles do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, MS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now…it cant be put off of forgotten just because I’m out for the day (or whatever). MS does not forgive.
-If you want to suggest a cure to me, don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped , all people with MS then we’d know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with MS, if something worked we would know.
-If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor.
In many ways I depend on you….people who are not sick….I need you to visit me when I am too sick to go out….Sometimes I need you to help me with the shopping, cooking or cleaning.
I may need you to take me to the doctor, or the physical therapist. I need you on different levels…you’re my link to the outside world…if you don’t come to visit me then I might not get to you .
…and, as much as it’s possible, I need you to understand me.
an addition to this letter was added by our member passing moments ..her feeling is that there is more that we as ms’rs are going through and I wanted to add this to this wonderful letter ..so here it goes..
I WANT TO ADD SOMETHING TO THE “LETTER TO NORMALS”……..
JUST BECAUSE I AM SICK, DOES NOT MEAN YOU CAN CATCH ANYTHING FORM ME, DON’T BE AFRAID TO GIVE ME A HUG OR KISS.
JUST BECAUSE I AM SICK, DOES NOT MEAN I CAN NOT DO THINGS ANYMORE, IT JSUT MEANS I HAVE TO DO THEM DIFFERENTLY…..I DO NOT HAVE TO STAY INSIDE CAGED UP LIKE A DOG.
I CAN STILL GO SWIMMING, PLAY IN THE PARK, GO TO THE AMUSEMENT PARK AND RIDE ON THE ROLLER COASTERS… SURE, I MAY HURT MY SELF, BUT SO CAN YOU.
I MAY HAVE TO STOP AND REST FOR A WHILE, OR MAKE SURE I GET TO A COOL PLACE IF I GET OVER HEATED, BUT I DO NOT HAVE STAY INSIDE AND LET LIFE SLIP BY ME.
I STILL ENJOY THE THINGS I USE TO DO, LIKE GARDENING AND COOK OUTS WITH FRIENDS.
I HEAR ALL THE TIME “YOU WILL HURT YOURSELF IF YOU DO THAT” WELL, HOW DO I KNOW IF I DON’T TRY OR YOU LET ME? I MAY BE FINE, OR I MAY NOT BE, BUT I WILL NEVER KNOW UNLESS I TRY AND BECAUSE I TRY ON ONE DAY AND CAN’T DO IT, DOESN’T MEAN I CAN’T DO IT ALL THE TIME…I MAYBE ABLE TO DO IT ANOTHER DAY….
IF YOU KEEP ME IN A GLASS HOUSE OR BUBBLE, I WLL BECOME DEPRESSED. DO YOU REALLY WANT TO BE THE CAUSE OF THAT DEPRESSION?
DON’T TREAT ME ANY DIFFERENT THEN YOU DID BEFORE I GOT SICK, I AM STILL THE SAME PERSON….I JUST HAVE PROBLEMS NOW… PROBLEMS THAT I CAN OVER COME.
ALSO, I WOULD LIKE TO POINT OUT THAT MY HEARING IS PERFECTLY FINE.. SO WHISPERING ABOUT ME WHEN I AM IN THE ROOM DOESN’T STOP ME FROM HERAING WHAT YOU ARE SAYING ABOUT ME… LIKE “OH LOOK, SHE USED TO BE SO VITAL, NOW SHE CAN’T DO ANYTHING”, OR MY PERSONAL FAVORITE ” OH, SHE HAS MS….DON’T GET TO CLOSE TO HER, YOU MIGHT CATCH IT”
MS IS NOT AIDS, OR HEPATITIS…YOU CAN’T “CATCH IT” LIKE YOU CAN A COLD OR THE FLU…IT IS SOMETHING INSIDE OF ME.
DON’T BE AFRAID I WILL DIE SOON….I WON’T, UNLESS I GET RUN OVER BY A BUS.
SO YOU SEE, I AM STILL ME…..I JUST HAVE A PROBLEM THAT I HAVE LEARNED TO DEAL WITH, AND SO SHOULD YOU.
I NEED YOU TO UNDERSTAND THAT,
I NEED TO YOU TO LOVE ME AND ACCEPT THAT I AM STILL ME, BUT WITH A FEW “ANNOYANCES”
WELL, THAT IS WHAT I WOULD LIKE TO ADD TO THE LETTER……AT LEAST THIS IS TRUE ABOUT ME AND WHAT I HAVE BEEN FACED WITH. THANKS FOR READING IT THIS GUYS….
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