8 replies to this topic

[Marina]

An Open Letter To Those Without MS

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 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...

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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.

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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.

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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.

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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.

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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.

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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?

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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.

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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.
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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.
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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.

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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/

Permission to reproduce here kindly given by Ricky Buchanan, who has also included Sue's version on Ricky's site here: http://notdoneliving.net/foothold/openletter/options.html

[Shirl]

I've just found this Marina - it's fabulous. But would my parents read it...the ones who most need to!

[Dae9]

morning all.

I read all these ways of explaining ms and how i feel stories.
I forward them onto my mum and wife all the time.. do think they will feel bad that i send them this all the time?
I don't forward it on for the  sympathy.

I know everyone wants to help but isn't it a bit full on how everyone without  ms has a cure!!! funny but bloody anoying.

Enjoy all

[Heste]

I find it helps to fall over occasionally. You can tell people about the problem over and over again but nothing knocks it home like a fall.

I am not suggesting falling deliberately  

My wife gave me a pile of cat bowls to carry back from the cattery. I promptly dropped them. I picked them all up and insisted on carrying them back to the house. Half way there I dropped them again.

Next time I tell her that my left hand grip is weak she will understand.

I still carry cat bowls. I am not looking for a way out of helping or sympathy. I just want her to understand.

I dropped a full cat bowl once. Fortunately it was in the cat house and cats just thought it was a free-for-all.

Regards,

John

[RedSonja]

Marina, may I translate this into German and put onto MS-aktiv.de?
If so, what shall I write underneath?

Thankyou in advance
Sally

[borghaerts]

Dear Marina

I am extremely impressed by your open letter.
May I also translate this document into Dutch and place it on the Dutch MS-Forum web ?

Thankyou in advance
Erwin

[Shirl]

Hello Erwin

Can I remind you this Open Letter is only published on this site by permission. So you'll need to follow these contacts for the permission to translate and publish the letter elsewhere:

Quote

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/

Permission to reproduce here kindly given by Ricky Buchanan, who has also included Sue's version on Ricky's site here: http://notdoneliving.net/foothold/openletter/options.html

[Marina]

Hi Erwin, haven't seen you around in ages! Hope you're doing well?

Shirl's already answered on my behalf. Ricky Buchanan is a very nice lady and is very strict about where and how the "Letter" is published. If you do write to her and she lets you publish it, please also mention Sue's name (as "S Hamilton" like I've done here) as Sue adapted it for us for MS via our mailing list, as at the time there was no version of it for MS - it was originally written for another condition and has since been adapted by various people for various conditions with similar symptoms.

Don't be too much of a stranger for too long now

PS - I've just seen on Ricky's site that there already is a Dutch version but, not knowing the language, I don't know if it's for MS or which condition. You can find it here: http://notdoneliving.net/foothold/openletter/dutch.html

Hope this helps! At least with any hard work at translating it...

PPS - I've just noticed the Dutch version is for AIDS (I think).

[kategrace]

i will forward this thread to all my friends and family, maybe they can finally open their eyes  :(
thank you for this Marina