Tuesday, May 3, 2011

Open Letter to Those Without Ehlers-Danlos Syndrome

An EDSer friend shared this with me, and in honor of EDS Awareness Month I wanted to pass it along. The original author is unknown, but it is a perfect way to describe our lives to those without EDS. Perhaps, you might want to send it to some of your friends and family, as well. I know in my circle, I have a few people that I think really should read it. I don't know if they will, but it is worth a shot. Good luck friends, zebras, spoonies - we are just just part of one big family on Mother Earth, one big family with really messed up collagen. ;)

Photo by Dani Davis & Designs By Rachael Brady
"Open Letter to Those Without Ehlers-Danlos Syndrome;

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.

Written by Michael (aka Deaderpool)"


xo
dani

25 comments:

Appleshoe said...

Thank you for this post. It's so true and so well written. I'm sending it on to all of my inlaws. Thank you and take care.

Anonymous said...

This is so great. I really suck at writing (not to mention that my hands are almost physically incapable), but if I was good at it, this is what I would write. This really helped me, and I thank whoever wrote it for having eds and understanding and sharing this to those of us who couldn't express the same feelings with words.

Maru Uni said...

i had to share. me and all my children have type 3. we were all just diagnosed. I knew my whole life that I was different and that it was not normal to feel like this. Especially when at 25 years old I felt 80. I am sure I got it from both parents as they both have signs.

we also have fructose malabsorption so we have cut out all sugars, which include fruits and most veggies. i am sure we have this bc of the EDS.

Mandy said...

Thank you for sharing. My best friend has this very cruel condition and what makes it harder is people who don't truely understand, as its (as the author) says, you can't see it and its not common, so judgements can be as hurtful as the extreme pain that my friend suffers. Thank you once again, Mandy

AKA "Meesh" said...

Awesome. It's not something I like discussing with people, but this is share-worthy. Thank you for sharing!!

Xan said...

Somehow I hadn't read this; thank you so much for sharing it--I cried pretty much the entire way through. I will definitely keep this around.

Anonymous said...

I love that you wrote this. I have not been diagnosed yet, but i am almost certain i have it. I am 18 and have been dealing with all of the symptoms since i was 10. I loved seeing that someone else can relate to how i feel. Not giving up, just simply knowing the limits you can stretch yourself. I know how much it sucks to hear people saying this will help, but the only thing that gives me a tiny bit of relief is very hot water, like a bath, takes the edge off once in a while. Thank you for this site!

Anonymous said...

I thank you also for this post. My daughter has been stuggling with pain for several years, since she was ten. She was finally diagnosed with joint hypermobility syndrome. I am thinking she may have EDS. She never seems to get much relief. She has flu like symptoms. Most of her pain is in her knees. She also has some pain in her ankles and her back. She really seems to hurts when we take long trips. I feel so bad for my baby girl. It has been really hard to see her struggle with this. She is so miserable. She has lost all of her friends. She will soon turn 13. I really hate she has to go through this at this time in her life. I would love to find a girl her age that is going through what she goes through. She had her gallbladder taken out at 10 years old also. She is now miserable all the time with stomache pain on top of having joint pain also. I feel so bad for her. God bless you all. You are in my prayers.

гид в барселоне said...

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ScoutBubba said...

I am that author. When posted years ago it made no impact, I recently posted AND revised it on my site http://limpingonastar.com/2012/10/14/open-letter-to-those-without-ehlers-danlos-syndrome/#comment-181 all I asked was for it to be shared and that I was credited as author. Thank you

TheCraftPad.com said...

I don't believe Michael to be the TRUE author - it was originally written by Ricky Buchanan and then adapted to MANY other disorders. I am researching to determine who the author of the EDS letter is, but at this point it does not look like the one you give credit to.
http://notdoneliving.net/openletter-options

Anonymous said...

I would just like to say thank you as this is the first post I found from searching that has helped me personally as my Girlfriend of 4 years was diagnosed last year with this and has been such a struggle. this has reminded me of all of what is going on inside her that we cannot see, I hope all the best to the people that have responded to this its nice to know that there is someone else out there.

dawn wentlandt said...

Please have daughter checked for sphencter of oddi dysfunction. My daughter had her gall bladder removed in 7th grade because of biliary dyskinesia. That was wrong. She was diagnosed almost a year later with sphencter of oddi dysfunction. It caused severe abdominal pain. She had all symptoms of EDS since 6 years of age. It was overlooked until she was 19. She is now 20. As it turns out, i my mother, sister, 2 nieces, all have EDS. We are all finding out now.

EDS Wisconsin said...

Written by Michael Hyatt

Anonymous said...

I was misdiagnosed with all of those diseases. It was Lyme disease, and I was sick for 4 years.Never stop searching for answers! Lyme disease mimics ALL of those symptoms and diseases!

Emily Cook said...

AMAZING! Everything I want to say in one place! Living with an invisible illness is a curse. I am so lucky I have great friends and family who are all positive influences in my life.

OffOnAWhim said...

What a beautiful letter with some great advice on how to help someone suffering and just be there for them and accept them at this stage of life exactly as they are. You seem like an amazingly strong woman!

Abby said...

I just found this article and this is the absolute greatest thing I've ever read. No one understands what it's like to live with eds. Thank you

ellen lenox smith said...

Outstanding efforts sharing the life we face forever with EDS. Thank you for articulating so well for us all!

Anonymous said...

I am so glad this article is still making the rounds. I recently heard a long-time friend of the family say "I read up on EDS and I fail to see where it is as bad as my osteoporosis." My heart sank. I may copy and paste this to her email. We Zebras have to stick together. (get it?? heehee) At least we all have each other...but with articles like this making the rounds, we have a better chance that universal understanding could be in our future!

Anonymous said...

Credit:
https://mobile.twitter.com/deaderpool

Wheelchair India said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
side wheel attachment

Keep Posting:)

Unknown said...

My daughter starting getting sick at 4 years old. Gallbladder attacks every day just about till age 12,had it removed. Month after rib pain,rib broke inside, had it removed at 16. At 18 diagnosed with CVS, that started at 4 also. Also at 18 diagnosef with inflammatory artritis. 19 after being tested for lyme,and ms in the past,now she finally hot a diagnosis of EDS type 3. It kills me as a mom,to see my daughter go through all she does. I have a hard time coping seeing all she's been through,and going through.

Susan Boyer said...

My daughter starting getting sick at 4 years old. Gallbladder attacks every day just about till age 12,had it removed. Month after rib pain,rib broke inside, had it removed at 16. At 18 diagnosed with CVS, that started at 4 also. Also at 18 diagnosed with inflammatory artritis. 19 after being tested for lyme,and ms in the past,now she finally got a diagnosis of EDS type 3. It kills me as a mom,to see my daughter go through all she does. I have a hard time coping seeing all she's been through,and going through.

Anonymous said...

Does anyone with EDS have sleep disorder?