My thoughts about my life now.

So many of my friends and family have been so loving and supportive during this past year as I am learning to deal with life these days and I am so thankful for that. I am thankful for all the prayers as well. Often I am asked what I need or what would be helpful and a lot of times I am at stuck not really knowing what to say. I found this letter type format that helps express what it is that I need and I hope that it will be helpful to answer those questions. I have shared this also on my blog but if you are interested in reading the letter I have posted it here. If you know someone, or you are dealing with chronic pain then maybe this post will help you explain to others what may be helpful for you. Feel free to copy it if you need to to make it your own.

I am sharing this with my friends and family because I am often depressed because of this genetic disorder that keeps me from having life as I once knew it. I try every day to be happy about something and there are times when I just can’t seem to get there. I am hoping that these thoughts, parts of which I borrowed from someone who has this same disorder, will help explain what my life is like now. So that if you find me complaining or being depressed or sad or you have noticed that mood has changed this past year don’t worry, I am just working things out.

To be honest I have been and still am struggling with what the rest of my life is going to look like. I have resolved many questions that I had about this but many more surface all the time and it is because of the genetic disorder that I have. I often feel alone in my illness and I was doing some math the other day…. That is scary…. But the type of illness I have is a genetic disorder, Ehlers Danlos Syndrome, that is very rare. The type that I have affects about 1 in 20,000 to 50,000. The Dallas Cowboys Stadium seats 80,000. That means that on any given Sunday when the Cowboys are playing at home there would be only 1-4 people at the game who has the same type of genetic disorder that I have. It kinda puts it into perspective as to how much is not known about this disorder. It is also important to know that I have many other disorders because I have Ehlers Danlos Syndrome so it is not just one disorder that I have to deal with. I have Postural Orthostatic Tachycardia, Rheumatoid Arthritis, Lupus, Fibromyalgia, and several other disorders. Most of the time my doctors don’t know what to do with me because they have no other patients who have EDS so it is very hard to get the treatment that will help me deal with my symptoms. There is no cure for EDS and treatment is trial and era most of the time. I am very very thankful for the things that we do find that helps.

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 …

 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 because I’m still me stuck inside this body which seems like has betrayed me.

I still worry about school, will I get to finish my Master’s, work, will I ever be able to work again, and my family, will I be able to help them when they need me, and friends etc., and most of the time I’d still like to hear you talk about you.

I appreciate your input but having EDS is hard to understand so your suggestion about what I could or should do may be helpful but please don’t be offended if I say that I have tried that before or I answer with why that would not be helpful.

EDS has affected everything in my body and I may not be able to do many things with my friends but I still want to be part of the “gang.” Please continue to invite me to participate in activities.

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 others do when they have the flu (tired, achy and sore), that is my baseline and it often goes down from there. 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 and I am just now learning how to pace myself to help me conserve energy. All these years I have pushed myself way beyond what was healthy for me which I believe has caused my rapid decline in this past year.

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 than ever.

Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.

Please know that because I now know what is wrong with me I am very interested in researching the ins and outs of this disorder and what it does to me and what may help and what will harm. I would hope that you would remember that I don’t have very much going on in my life other than going to the doctor since I am unable to get out and do other things and also because I don’t have a husband or family, there is not much news for me to share about life. Hearing from my friends and family is a joy to help occupy my mind.

Many people have the same type of joint pain and feel bads that I have but if you want to suggest a cure for 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 I 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).

I want you to know that the pain and instability etc from EDS moves around in my body all the time, sometimes from moment to moment.

If you want me to do something, ask if I can and I’ll tell you. Just because I was able to do something 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 for the entire day 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. I often tell myself that fresh air never hurt anyone but then I remember that just getting dressed to go outside to get that fresh air is just not possible for me most days. Telling me that I need exercise is not correct and probably not appreciated – if I could possibly do it then, I would.

EDS causes 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, meaning your joints dislocate,  through no fault of your own?

Please understand…

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 is life-altering and not fun at all…

Finally, please remember that I am the same person I was before I was diagnosed with this even though I have always had symptoms of it; 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 anyone else.

But most importantly I need you in my life.