DON’T tell me you know how I feel. No one knows how anyone else feels. Two people with the same disease may feel totally different. We all have varying thresholds of pain, and pain cannot be measured.

DON’T tell me about your great-aunt GERTRUDE and her arthritis, and how well she managed in spite of it. I am not AUNT GERTRUDE, and I am doing my best.

DON’T tell me, “It could be worse”. Yes, it could be, but I don’t need to be reminded.

DON’T decide what I am capable of doing. Arthritis doesn’t affect the brain. Allow me to decide what activities I can participate in. There may be times I might make the wrong decision, and if I do, I’ll know it soon enough.

DON’T be upset that you cannot ease my pain. It won’t do any good for both of us to be miserable.

DON’T ask me how I feel unless you really want to know. You may hear a lot more than you are prepared to listen to.

DON’T assume because I did a certain activity yesterday that I can do it today. Arthritis is ever-changing.

DON’T tell me about the latest fad ‘cure’. I want to be cured more than anything, and if there is a legitimate cure out there, my doctor will let me know.

DO learn everything you can about the disease. The more you know, the better equipped you will be to know what to expect.

DO realize I am angry and frustrated with the disease, not with you.

DO let me know you are available to help me when I ask. I’ll be grateful.

DO offer me lots of hugs and encouragement.

DO understand why I cancel plans at the last minute. I never know from one day to the next how I will feel. Arthritis is like that.

DO continue to invite me to all the activities. Just because I am not able to bike ride along with the gang does not mean I can’t meet you for the picnic at the end of the trail. Please let me decide …

If you liked this open letter, you might want to read one of the versions people have adapted for other illnesses, or other languages, take a look at the open letter options page.

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This article was originally published at Arthritis Dos And Don’ts and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

CVS hebben betekent
veel veranderingen, waarvan er een hoop onzichtbaar zijn. De meeste mensen
begrijpen weinig of niets van CVS en de effecten, in tegenstelling tot AIDS
en kanker. Hetgene wat ze wel denken te weten, is vaak verkeerde informatie.
Om iedereen te informeren die het wil begrijpen…

…Hier zijn de dingen die ik je wil laten begrijpen voordat je een oordeel
hebt over mij…

Begrijp alsjeblieft dat ziek zijn niet betekent dat ik geen
mens meer ben. Ik lig dan misschien het grootste deel van de dag plat op
bed en ik lijk misschien niet erg leuk gezelschap, maar binnenin dit lichaam
ben ik nog steeds ik. Ik maak me nog steeds druk om school en werk en mijn
familie en vrienden, en meestal vind ik het nog steeds leuk om jou te horen
praten over jouw dingen.

Begrijp alsjeblieft dat er een verschil is tussen "gelukkig" en "gezond".
Als je griep hebt, voel je je waarschijnlijk belabberd, maar ik ben al jaren
ziek. Ik kan me niet de hele tijd miserabel voelen, sterker nog: ik werk
er hard aan om me niet miserabel te voelen. Dus als je met me praat en ik
klink gelukkig, betekent dat dat ik gelukkig ben. Dat is alles. Ik ben misschien
wel moe. Misschien heb ik pijn. Misschien ben ik zieker dan ooit. Zeg dus
alsjeblieft niet: "Oh, je klinkt beter!". Ik klink niet beter,
ik klink gelukkig. Als je het daarover wilt hebben, prima.

Begrijp alsjeblieft dat vijf minuten kunnen staan niet betekent dat ik tien minuten kan staan,
of een uur. Waarschijnlijk heb ik met die vijf minuten mijn reserves opgebruikt
en moet ik bijkomen – zoals een atleet
na een wedstrijd. Die kunnen hun prestatie ook niet direkt herhalen. Bij
veel ziektes ben je óf verlamd óf je kunt je voortbewegen.
Met deze ziekte ligt dat ingewikkelder.

Herhaal alsjeblieft de bovenstaande paragraaf
met "opzitten", "lopen", "denken", "gezellig
doen" enzovoort, in plaats van "staan"… het gaat voor alles
op. Dat gebeurt er met je als je een vermoeidheidsziekte hebt.

Begrijp alsjeblieft dat chronische ziekten variabel zijn. Het is heel goed mogelijk (en zelfs
normaal voor mij) dat ik de ene dag naar het park en terug kan lopen, terwijl
ik de volgende dag nauwelijks in de keuken kan komen. Val me alsjeblieft
niet aan door te zeggen "Maar dat heb je eerder wel
gedaan!" als ik ziek ben. Als je wil dat ik iets doe, vraag me dan of
het kan en ik zal je antwoord geven. Zo kan het ook gebeuren dat ik op het
laatste moment een uitnodiging moet afzeggen. Vat dit alsjeblieft niet persoonlijk
op.

Begrijp alsjeblieft dat "erop uittrekken en dingen doen" niet
zorgen dat ik me beter voel, het kan me zelfs veel zieker maken. CVS kan
een secundaire depressie veroorzaken (wie zou er niet depressief worden van
jarenlang in bed liggen!) maar het wordt niet veroorzaakt door depressie.
Mij vertellen dat ik meer frisse lucht en beweging nodig heb, kan ik niet
waarderen en het klopt ook niet – als ik zou kunnen, zou ik dat al
doen.

Begrijp
alsjeblieft dat als ik zeg dat ik moet zitten/liggen/medicijnen innemen,
ik dat ook echt nu moet doen – ik kan het niet uitstellen
of vergeten als ik wat anders te doen heb. CVS vergeeft niet.

Begrijp alsjeblieft dat
ik niet al mijn enegrie kan besteden aan beter worden. Bij een kortdurende
ziekte zoals griep kun je je leven een week of wat pauzeren terwijl je
herstelt, maar onderdeel van chronisch ziek zijn is je realiseren dat je
ook energie moet besteden aan je leven. Dat betekent niet dat ik niet probeer
beter te worden. Het betekent niet dat ik het heb opgegeven. Zo gaat het
leven nu eenmaal als je moet omgaan met een chronische ziekte.

Als je
een geneeswijze aan me wilt voorstellen, doe dat alsjeblieft niet. Het is
niet dat ik het niet waardeer dat je aan me denkt, en het is niet dat ik
niet beter wil worden. Het is omdat al bijna al mijn vrienden me door de
tijd heen al vanalles hebben aangeraden. In het begin probeerde ik het steeds,
maar uiteindelijk realiseerde ik me dat ik zoveel energie besteedde aam het
proberen van dingen, dat ik alleen maar zieker werd, niet beter. Als er iets
was dat alle CVS-patiënten kon genezen, of zelfs
maar helpen, dan zouden we dat weten. Dat is geen samenzwering van pharmaceutische
bedrijven, er is een wereldwijd netwerk (op internet en daarbuiten) van mensen
met CVS. Als iets zou werken, zouden we het WETEN.

Als je me nu nog steeds iets wilt
aanraden, do dat dan het liefst schriftelijk, maar verwacht niet dat ik
de deur uit ren om het te proberen. Als het me nog niet eerder is aangeraden,
zal ik je voorstel met mijn dokter bespreken. Hij staat open voor nieuwe
suggesties en is een goeie vent, hij neemt wat ik zeg serieus.

Begrijp alsjeblieft dat herstellen van een ziekte als deze
erg traag kan gaan. Mensen met CVS hebben zoveel systemen in hun lichaam
die fout lopen dat het lang kan duren om die allemaal weer op de rails
te krijgen.

Ik ben van jullie – de mensen die niet ziek zijn – afhankelijk
voor vele dingen.

Maar het belangrijkste is nog wel dat je mij begrijpt.

If you liked this open letter, you might want to read one of the versions people have adapted for other illnesses, or other languages, take a look at the open letter alternatives page.

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This article was originally published at Open Brief Aan Diegenen Die Niet Chronisch Ziek Zijn and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

Most people don’t understand much about these disabilities/diseases and their 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 disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not 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. I may be tired. I may be in pain. I may be sicker that ever. 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. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.

Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.

Similarly, my illness/disability may vary suddenly, meaning 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 worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.

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 can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.

If you want to suggest a cure to me, please 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 a certain illness or disability 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 similar and different chronic illnesses and disabilities, if something worked we would know about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.

Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

I depend on you – people who are able-bodied – for many things.

If you liked this open letter, you might want to read one of the versions people have adapted for other illnesses, or other languages, take a look at the open letter options page.

You can also order a poster or print version of An Open Letter To Those Without Invisible Chronic Illness … from No Pity City.

An Open Letter To Those Without Invisible Disability Or Chronic Illness … by Ricky Buchanan is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 2.5 Australia License.
Based on a work at notdoneliving.net.

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This article was originally published at An Open Letter To Those Without Invisible Disability Or Chronic Illness … and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

There are many different versions of the "Open Letter To Those Without …" available now. These are the two current versions which I have done myself:

• Open Letter To Those Without CFS/Fibro – The original “Open Letter”.
• Open Letter To Those Without An ID or ICI, is very similar to the above, but adapted for people with Invisible Disabilities or Invisible Chronic Illnesses.

Prints

You can also order a poster or print version of An Open Letter To Those Without Invisible Chronic Illness … from No Pity City. These are great to stick on the wall where many people can read them. No Pity City also has many t-shirts and other things with great disability and chronic illness-related slogans you may enjoy.

Translations

Translations of the Open Letter that I am currently aware of:

• Dutch
• German
• Turkish

Please feel free to make more translations and let me know about them!

Minor Adaptions

These are (usually slight) adaptions of the original Open Letter To Those Without CFS/Fibro. They have been adapted by other people so the letter fits other disorders:

• An Open Letter To Those Without MS
• An Open Letter To Those Without Cognitive Disabilities
• A Letter to those without Hereditary or Idiopathic Angioedema
• An Open Letter To Those Without Hepatitis C
• Open Letter To Normals About Fibromyalgia
• A Letter From Someone With Chronic Pain
• Open Letter to Loved Ones about Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome
• Open Letter To Those Without Ehlers-Danlos Syndrome
• Open Letter To Those Without Symptomatic Tarlov Cysts
• Letter to Folks Without Depression and Anxiety

Major Adaptions

These still have the same inspiration – the original Open Letter To Those Without CFS/Fibro, but are significantly changed from the original:

• Letter to Lyme/CFS Patient from Boyfriend
• What RA is Like: A Letter For Family and Friends
• Please understand… (from the perspective of a non-disabled ally)

Same Intention, Different Inspiration

These are similar in spirit to the Open Letter but, as far as I am aware, have been conceived completely separately.

• Arthritis Do’s And Don’t's, Origin Unknown.
• Letter To Normals From Someone In Chronic Pain
• To The Families And Friends Of RSD/Chronic Pain Patients
• What I’d Like to Tell My Church About Ministering To People With Chronic Illness
• If You Do Not Have Rheumatoid Arthritis, Please Read This

Know Of More?

If you know of more adaptions and similar works that I could list here, please let me know!

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This article was originally published at ‘Open Letter’ Alternatives and Adaptions and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

Having CFS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about CFS 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 flat on my back in bed and I might not seem like great company, 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. I may be tired. I may be in pain. I may be sicker that ever. 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. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. 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 a fatigue-based illness does to you.

Please understand that chronic illnesses are 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, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. CFS may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct – if I could do it, I would.

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 can’t be put off or forgotten just because I’m doing something. CFS does not forgive.

Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure to me, please 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 CFS 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 CFS, 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.

Please understand that getting better from an illness like this can be very slow. People with CFS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you – people who are not sick – for many things.

If you liked this open letter, you might want to read one of the versions people have adapted for other illnesses, or other languages, take a look at the open letter options page.

The Open Letter To Those Without CFS/Fibro … by Ricky Buchanan is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 2.5 Australia License.

Share This With A Friend

Do you know somebody else who would find this interesting or useful? Please forward it to them.

Did somebody forward this post to you? Visit Not Done Living and subscribe to receive these posts for free!

This article was originally published at The Open Letter To Those Without CFS/Fibro … and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.