My Letter "To A Normie From A Zebra Spoonie"

May is Ehlers-Danlos Syndrome Awareness Month and I would like to do my part in raising awareness. My disability is invisible, but just because you can't see it, it doesn't mean it is not real. It is very real.


Ehlers-Danlos Syndrome (EDS) is a rare inherited condition affecting connective tissue as a result of faulty collagen. The "glue" that holds our joints together does not work properly. This can cause problems in every single system of the body. A lot of people have never even heard of this condition or those that think they do are actually misinformed. This includes professionals and this is very distressing to sufferers.


There is a famous saying "Never judge a book by its cover", I think people should definitely bare this in mind especially when it comes to people because you have no idea what's really hiding behind a smile. I would like anyone that wishes to judge me to first take into consideration some of the following things I go through on a daily basis.


Every morning when I open my eyes, if I have managed to get those mere 4 hours of precious sleep I wonder why me? I feel like my body is trying to destroy me and I feel trapped. I can not just simply get out of bed and start the day I have to do a once over to find out which joints have dislocated whilst iv been sleeping, have they all gone back in or is my hip still subluxed? If I just got up with out doing this I could end up in a pile on the floor and an ambulance on the way.


I am scared of what the future holds for me, or whether I even have a future. EDS is very unpredictable. Will I really have to start using that electric wheelchair or will I be one of the lucky ones and be able to carry on using my crutches for a while longer? Are the 5 hospital appointments a week going to be forever? Maybe, I just don't know. So when I'm distant and quiet, please take a minute to be patient with me, I'm not upset with you. I'm trying to overcome my fears.


Growing up I had so many hopes and dreams like everyone else does but gradually I feel like I have lost the person I once was. I struggle to do some of the most simple daily tasks that some people don't even have to think twice about. Having a shower is exhausting, brushing my hair can cause me to dislocate my shoulders and that's all before iv even attempted to get dressed. I can no longer do many of the things I enjoyed doing. EDS has taken so much away from me, there isn't a second that goes by that I can be free from this as I am always reminded by the constant chronic pain. So if I appear angry, it's not you I'm angry with, I'm angry with EDS.


Unfortunately I have to think about everything before I actually do it and be careful how far I push my body due to multiple dislocations/subluxations. You may not think I am capable of doing certain things but only I can make that decision, only I know my body. I still want to be included and invited to do things. I am still human after all, EDS can not take that away from me. EDS has affected my joints and my internal organs, not my ability to think for myself so please don't think you know what is best for me. If I make the wrong decisions, it is I who has to deal with the consequences.


I refuse to live my life being miserable everyday. If I was to live my life being miserable because I have an incurable condition then I would become severely depressed. But I just want people to understand the difference between being "happy" and being "healthy". When you see me/speak to me and I seem happy, it simply means I am happy. That's all. It does not mean that I am healthy. I am still in pain. I am still struggling. I could even be sicker than ever but I just refuse to let it win.


Please please please don't suggest "cures". I have probably tried everything you could possibly suggest anyway and I know you may only be trying to help but Ehlers-Danlos Syndrome is incurable. It is a Genetic disorder. So unless you can change my "genes" I'm stuck with it. All I really want from anyone is understanding and support.


There is a lot of misunderstanding of the pain, instability and dislocations of EDS. It is so unpredictable, one minute the pain could be severe in your knee and the next it could be in your hip or shoulder, it affects the whole body and can move around. We can suffer from bad flare ups causing us to be bed bound for days on end, in severe pain. Then other days we may be able to manage to do that little bit more. So just because I could do something yesterday, or earlier, it doesn't mean I will be able to do the same thing today or even later. Standing for just short periods of time can cause me to become fatigued and cause a lot of pain and in some cases I won't be able to anything for the rest of the day.


I don't want to be told you know how I feel. You don't. I'm not after sympathy, that's not what I want. I don't want your pity. I know sometimes i look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and fatigue. When I do have all of my braces on and they are visible, don't stare. It hurts. I already feel like a freak.


Getting out and doing things does not always make me feel better. Sometimes it's impossible or just too stressful, please understand that. Telling me that some fresh air and some exercise may make me feel better is not correct - if I could possibly do it then I would. Some days I just don't want to do anything apart from curl up in a ball on the sofa in my pjs. How would you feel if you had a body that could you pain 24/7 and could spontaneously rearrange itself through no fault of your own?


It's important that when I say I need to sit/lie down, need to take pain relief or I need to go home, that you listen to me. I need to do it now. It can't wait because I'm doing something more exciting. EDS is not forgiving.


I am still the same person I was before I was diagnosed and before my symptoms started to progress so please try not to treat me too differently and leave me behind. I still have feelings . I still laugh, cry, love and hate. I am me not my disability. EDS sucks but I'm a fighter and I won't let it win.

All I ask is that you understand, support and love me Written by Rebecca-Katie Burton-Thompson