I’ve known about this letter for a while now, and sometimes I feel the need to read it again, as if by reading it once more, people around me will understand what having an feels like even when they’re not the ones reading it. However, at the end of the day, I cannot step in those people’s shoes and make them accept what is going on inside me. I am the first person that needs to educate my family, friends, ex-colleagues etc. I am the first one that has to tell them the same things over and over, and I will be the only one to know the truth about my own MS. I am my expert-patient and I will be the only one that will have to fight for my medical future, as no-one else can do it for me.
In the past I’ve said that having an illness like MS is a ‘lonely illness’. It really is, because there are no two people alike who have MS, so I need people to understand why I do the things I do (or don’t do), and I need them to accept and support me instead of judging me because of their preconceived and wrong ideas about my illness. So for that reason I am blogging the letter to those without MS, so they can learn about our life, our illness and our hopes, dreams and feelings.
Thank you in advance for taking time to read it, think about it and if you need to, feel free to email me if you want to know more.
“An Open Letter To Those Without MS,” by Ricky Buchanan
“Having MS means many things change, and a lot of them are invisible. Unlike AIDS and cancer, most people do not understand even a little about MS and its effects, and of those that think they know, many are actually misinformed.
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 sitting on my arse, 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 stuff 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, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. 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 up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what this kind of illness does to you.
Please understand that MS is variable. It’s quite possible (for me, it’s 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, if 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. MS may cause secondary depression (wouldn’t you get depressed if you were stuck inside for ages on end!?) but it is not created by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct – don’t you think that if I could possibly do it that I would?
Please understand that if I say I have to sit down/pee/lie down/take these pills now, that I do have to do it right now – it can’t be put off or 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, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. He’s open to new suggestions and is a great guy, and he takes what I say seriously.
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, I need you to shop for me, I need you to cook and clean for me, I need you to take me the the doctors, sometimes I need you to support me so I can walk to the bathroom without falling over.
I need you on a different level too… you’re my link to the outside world, if you don’t set up my recliner in the lounge-room I can’t watch TV and if you don’t bring home a newspaper I can’t read it. If you don’t come to visit me then I won’t get to see you.
… and, as much as it’s possible, I need you to understand me.”
Adapted by S Hamilton 2004 – taken from an article by Ricky Buchanan. When forwarding or publishing elsewhere please use the URL of Ricky Buchanan’s original version – http://notdoneliving.net/foothold/openletter/
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2012. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.