Dear Loved One,

Having Ehlers Danlos Syndrome means that many things change. Just because you can't see the changes doesn't mean they aren't real.

Most people don't understand much about this disability/disease 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...

I am scared. I don't know what the future holds for me. Will I end up in a wheelchair or will I be one of the lucky ones. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.

I am angry. EDS has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is EDS I am angry with, not you.

Please understand that having EDS doesn't mean I'm not still a human being. I have to spend most of my day being very careful about 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, work and my family and friends etc, and most of the time I'd still like to hear you talk about yours too.

Please don't assume you know what is best for me. EDS has affected my joints and such, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else but I can bring the hot chocolate and watch.

Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu (tired, achy and sore). Please keep that in mind.

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 (EDS is genetic, this means I have had it since birth (even if I was only diagnosed recently, I have been suffering from this since I was born)). 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 don't tell me how “Auntie Mary” cured her joint problems by drinking vinegar or any other supposed remedy. 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. There is NO cure for EDS (and until they find the exact genes causing it and technology and medicine get to a point where something can be done about this, there will be no cure), only some of my symptoms and pain can be treated. If there was something that helped, then myself and other suffers would know about it (this is part of the reason I am a member of the online communities I am a member of). 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, and if something worked we would know about it. If after reading this, 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.

I want you to know that the pain and instability etc from EDS moves around. 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. Just because I climbed the stairs yesterday (or an hour ago) doesn't mean I can do it today (or in another hour). Yesterday (or earlier) my shoulder was throbbing; today (now) it is my knee, who knows what it will be tomorrow (or later). Also 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 those 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.
Similarly, EDS and the symptoms of it 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. EDS may cause a secondary/reactive depression (wouldn't you get depressed occasionally if you had a body that could change suddenly for no reason, caused you pain 24/7 and could spontaneously rearrange itself through no fault of you own) but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated - if I could possibly do it then, 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. EDS does not forgive its victims easily.

Please understand that I can't spend all of my energy trying to get well from EDS it is incurable (and genetic, so unless I can change my gene’s I cannot change my disease/disorder). 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 like EDS 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 EDS or any chronic illness/disability.

As you can see EDS really Sucks...

Finally, please remember that I am the same person I was before I was diagnosed with (started getting symptoms of) this; EDS doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.

But most importantly, I need you to understand me.

Signed


Me (insert your name here)


---------------------------------------------------------------------------------------------------------------------------------------

This has been adapted by me (with permission from the original writer) from a group of letters she wrote about about CFS/Fibro, ICD/ICI's etc and that others have written about MS, Cognitive Disabilities, FMS, Chronic Pain Fibro and More and they can be found at http://notdoneliving.net/foothold/openl ... tions.html (I have her permission to change it and to share it (and I will be giving her the link to link to on the Open Letter site). I wrote this years ago when they thought I might have had EDS (but I don't) and after reading a lot about it including lots of posts here (I like to help people (incase you didn't get that already <LOL>). I have been thinking about doing one for Lupus and Migraines as well...

*** edited to add the line - As you can see EDS really Sucks... near the bottom of the letter.... ***

I am printing this out and giving it to my family and friends...It is written exactly like I feel. Thank you for this...maybe they will get why each day is different with me, why on some days I feel like I can challenge the world (sometimes regretting my actions later) while on other days, all I want to do is to rest and not move much due to pain and fatigue. Hugs, Sunny

I am glad that this was of help to you.

I wrote it about how I have read others I have talked to with EDS and HCTD's seem to feel (and how I feel with my RSD). Copy away and hand it out as you see fit.

Glad I could be of help...

What can i say??

Think I can get this tattooed on me so the whole world can read it?

Giggling as I imagine a giant tattoo of this letter. I can see me shoving my tattooed forearm in front of an offending relative-- "read paragraph three!"

Liz

this helped me so so much to get my true feelings out to my famliy. or at least to write down what i want to say. let's see how they react... but thank you!

Making this a sticky...

Read this before and didn't say thanks. Made me really sad (I'm in a grieving stage) but it's too useful to not comment and try to use.

So...
THANKS!

I'm going to adapt this and use it for myself and my close ones.

Good job again, Shaz.

Glad I could help people... I wrote this. modified it a long time ago (when they thought I might have had EDS - which I don't), but thought it was worth posting here for all to use new and old with or without EDS to help explain just how EDS seems to effect sufferers. It is a starting point for others to modify to fit them or to just print out if it its them too (I have done another one in the Neurological board about RSD/CRPS which I do have as well)...

I am glad that I can help others out to make dealing with the cr@p that our health throws at us at little easier...

I'd like to add another part...

EDS Sucks!

Ok i'm done

Thanks

Gee, you just made me smile (and I'm NOT in a good mood). I mean, it's serious... but how is it that brevity works so well sometimes?

Maybe it's like the Occam's razor of explaining EDS to others. (Except I might add one more word in the middle that would get censored...)

Wow, this is a great adaptation of " Open Letter". Thank you so much for doing it

Thanks so much for taking the time to type this out! It is perfect You did a great job!