I CLEANED AND EDITED THIS UP A BIT.


An 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.

Not to be mean, but please don’t tell me you know how I feel.

You don’t.

I don’t want your pity. But please do offer me your support and understanding. I will appreciate that more than sympathy. Please don’t tell me how “Auntie Mary” cured her joint problems by drinking vinegar or any other supposed tonic. Please don’t suggest a remedy, I do appreciate the thought, and I really do want to get well. At first I tried them all, but then I realized that I was using up so much energy trying things that didn’t work, I was making myself sicker, not better.

There is NO cure for EDS.

(And until they find the exact genes, technology and medication there will be no cure), only some of my symptoms and pain can be treated.

If there was something that helped, someone would know (this is part of the reason I am a member of the online communities I am a member of). There is worldwide networking between people with similar but 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. 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. This is not a drug-company conspiracy.

“But you did it before…”

I want you to know that the pain, instability and almost all of my symptoms from EDS moves around. Yesterday my shoulder was throbbing; today it is my knee, who knows what it will be tomorrow.

Being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes. 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 a 100 meter dash instantaneously either. Imagine the above exchanging standing for, “sitting up”, “walking”, “thinking”, “and being sociable”, it applies to EVERYTHING that I do. I am dealing with invisible pain and a great deal of fatigue. Even on a good day I feel like you would with the flu times ten.

Please keep that in mind.

Understand the difference between “happy” and “healthy”. If you say “Oh, you’re sounding better…” I am not, I am sounding happy. Happy because this is a good day with friends. EDS and its symptoms may fluctuate suddenly, meaning I may need to cancel an invitation at the last-minute. If this happens please do not take it personally. Know 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 but it is not the cause of my depression.

Telling me that I need some fresh air and exercise is not right and probably not appreciated – if I could feasibly do it then, I would. Please keep inviting me to places, I may not join in, but I will be there in the stands cheering you on.

Again, please understand…

If I say I have to sit down/lie down/take these pills now, then I have to do it right now! It can’t be put off just because I’m doing something else more stimulating. EDS does not forgive its victims easily. A major part of having a chronic illness like EDS is dealing with the awareness that you have to spend energy on having a life while you’re disabled. This doesn’t mean I’m not trying to get healthier and I haven’t given up. It’s just how life is when you’re dealing with EDS, or any chronic illness for that matter.

As you can see EDS really sucks…

To wrap this up, please remember that I am the same person I was before I was diagnosed with this; EDS doesn’t change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am yours truly, I am not my disease. Please continue to love me just as you did in the past. I need plenty of love, understanding, support and embraces.

But most definitely, I need you to understand.

 

10 thoughts on “I CLEANED AND EDITED THIS UP A BIT.

  1. Well said. My family has several autoimmune diseases, Parkinson’s, Rheumatoid arthritis etc. My sister’s and I sent in DNA to 23 and me, both to help science and find out about our Genetics. I will check and ask if EDS is part of their studies. if not i will request they add it. I am not connected to the company in anyway except sending in my DNA but have a lot of respect for there vision to help. I hope they find a cure and a way to prevent EDS very soon.

  2. I hate having EDS and I hate that other people have it as well but, I love you so much for this and your Deadpool icon just makes me love you even more. It’s comforting to know that not only do people have the same ideals as me, but those same people enjoy Wade Wilson. A+ and gold star to you for life.

  3. This is mainly for people who already have EDS to tell them how they feel. You vannoy “catch” EDS, it is a genetic thing. Some feel the symptoms all their lives, others like me get them later in life. People have a lot of questions even our doctors because no one really knows what causes it and so few have it, so researchers tend to “look it over” when deciding what to focus on. EDS is something that can’t be described as it comes is so many forms. Mine makes me have constant pain, others have vascular problems. I do need to write up for people who are not ” in the know “, thanks for pointing that out.

  4. I liked the article but the questions that every one has were not addressed. How does one contract the disease? What is the disease? Is it a disease that makes you tired like narcolepsy? I came away from the article having empathy but no knowledge.Perhaps that was your purpose. Is it a disease of the joints? What happens when you get a treatment? When you have no pain, are you able to continue physical exertion longer? Is there a particular time of day that things are worse? Is there any activity that makes out better

  5. Very good post. You are absolutely right. I also think that what is VERY detrimental to patients with EDS is the time it takes for diagnosis and management. If only people and professionals listened…

    • The REAL problem is the government, sticking their heads where they don’t belong. Like the current hearings to change Hydrocodine into the most controlled lever, 2 or 3 I can’t remember. Doctors are afraid of loosing their licence.They make databases on people on the drugs we take. It also doesn’t help when you look like me, long hair and tattoos and when you disclose the fact you were a addict over 10 years ago. Thanks for the comment, sorry for ranting

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