Saturday, 3 August 2013

The Stuck Feeling

Stuck is a word I often use. Stuck in a life, stuck in a body, stuck in pain, stuck in my bedroom, stuck in depression, stuck in time yet the years fly past. I sometimes find these illnesses very over bearing. I feel like they are closing in on me or that I am sinking in quicksand and cant catch my breath. It is a very lonely feeling and no matter how much you try you can never get across how an illness can change your world and make you feel on a daily basis. I don't want to emphasise greatly right now on what makes up the stuck feeling, because I know you probably all get it too and will know exactly how horrible it makes you feel. In the future, I will return to it in more depth as it is something I really struggle with. At some point in life, we all will feel stuck in certain aspects of life, but it's hard feeling it everyday from a chronic illness.

I was never going to write a post on this subject out of fear of public perception. I feel like if you were an outsider looking into a life on chronic illness and happened to just casually come across this blog, you would think I was crazy or wasn't making sense in my description. I constantly fear being judged by people and what people think of me, even more so now that I have a disability. But as I woke up today and scrolled down my twitter news feed I saw some extremely sad news of a young boy called George from Cardiff with EDS who had tragically passed away aged just 19. My heart dropped when I added two and two together and realised George was the first person who got in touch with me when I started this blog. I will always appreciate his kind words of support and how I was so happy that someone had got in touch.

A chronic illness is much more than dealing with just pain. So many uncertainties come along with it. When they initially told me Ehlers Danlos was incurable and there was a huge lack of medical professional understanding all I could think was, "So will I always be in this much pain until I'm old and grey". "Will this pain get worse". "How am I going to cope". "I don't know of anyone with this". "What do you mean doctors can't really help control the pain". It's only in the last few weeks that I've found out that probably the best cure for us all is in fact, EACH OTHER. 

I have had an incredible amount of lovely people, of similar age and sometimes young or older, get in touch with me who have Ehlers Danlos and many other chronic illnesses. In that moment when I am talking with them I have such a feeling of safety. Knowing I can't be judged, knowing I am not alone. Its something no one could understand unless they have been through an illness so complex. Every time I hear their stories and experiences of pain it mirrors my own and even though I feel terribly sad hearing what they are going through themselves, I have the confirmation that I am not alone in the pain or mood I am experiencing myself. Something that I convinced myself otherwise during my lonely periods with illness.

 I urge anyone who is reading this with Ehlers Danlos Syndrome or any who suffers with other incureable or chronic illnesses, you are noth alone. The best thing I have ever done so far during my time with illness is connect with others in similar situations. If you are some one who has never spoken to someone with chronic illness or you don't know of anyone in a similar situation, try to get it touch and make some friends because there is nothing worse than feeling alone in something no matter what it is. Having someone to relate to is a wonderful thing and is one of the only positives in this negative illness. Before I started this blog I had only even spoken to one person with my complicated illness. It was boxing day, I was surrounded by family yet felt so alone in this stage of my illness. I always find anniversaries such as Christmas, Birthdays, New Years really difficult to get through because I'm usually in bed and think about how life hasn't changed and how pain just gets worse or how different I am to others my age.

I signed up to a forum (the inspire website supporting EDS is one of my favourites). A girl called Steph got in touch with me after I posted a small introduction. Just hearing her say that she was my age, that she had the same illness as me and how positive she was cheered me up more than she will ever know. Every time I was having a really bad day, I remembered that girl and how positive she was and hoped that I could have her mind set one day.

Since I have started this blog, I haven't managed to go out much (I went out but had to go sit in the car in pain), my pain is in a very bad flare up and my sadness and depression is very bad. But I have a reassurance in knowing that every time somebody gets in touch with me they are going through it too and they make me feel better about my day and in my moments of despair. That is what has been making me smile. It has proved me wrong in my reality of feeling like the most abnormal young girl my age.

I am now coming to terms with the fact that if someone who doesn't know about Ehlers Danlos Syndrome scrolls across this blog and cant relate to my personal story or has negative thoughts towards me, I am going to try and not let it bother me. They will probably never understand my situation. I'm not going to sit and justify my pain or how I feel to people who will never understand. Every time I sit and worry what others may think I'm going to stop myself and just say "They will never know because they haven't experienced this". Every time I feel myself getting agitated that someone doesn't understand, I will walk away and remind myself that I have people out there who truly do. This blog post is for everyone who is also in the same isolation boat that is chronic illness, especially when you are at a relatively young age . Although, maybe we should call it a ship because I've come to see just how many of us there truly is!

I just want to thank everyone who I have had the pleasure of speaking to because of this blog. You have all helped me get through my really bad moments, days and weeks and I hope you all know how amazing you are and worthy of a life worth living. I thank you for your time spent getting in touch and more importantly for reading this post.

Sending all my love thoughts and prayers to George Philpott's Family.
May you rest in eternal paradise


  1. Iam new 2 this eds type 3. My son who will b 8 in 15 days was recently diagnosed with it and with other issues. I feel so scared for him. I donot know anyone here inflorida with eds so I feel alone. If u know where I can get info on support groups I would appericate it. I understand the part where peoplee just dont get it. They cannot believe a 7 year old can b in so much pain. Thanks 4 listening. Jace mom Margaret

  2. Hi Margaret. is an Ehlers Danlos Natiojal Foundation Support Community,
    It is a wealth of knowledge. As a parent I know my mum struggles seeing her child in pain and she gets great help from viewing this site. People from all over the world have signed up to it (no fee needed)

    I am sorry for the pain your little boy Jace is experiencing. You can also try to web search EDS support groups. I will try and find some more information for you regarding Florida

  3. Thank you so much for the reply. I will check out the site and I appericate your looking 4 a support group 4 us. I hope 2day u will have a good day and even though I do not know her tell your mum hello 4 me:) margaret & jace

    1. Hi Margaret. I am Carol Nancy's mum. I can understand exactly how you are feeling. Its awful to see your children struggle with pain and anxiety. As a parent we want to be able to fix any problems they have and make everything better and not being able to do this is heartbreaking. My husband and I both struggle with this. What I try to do is to find out as much as I can about EDS so we are knowledgeable when attending drs appointments etc as there are not many clinicians here in the UK who know enough to help. Nancy wasn't diagnosed for many years but we never gave up hope of finding a Dr who would understand her symptoms. It is important as well to make Jace's school aware of EDS. They will hopefully be understanding and sympathetic to his needs. Nancy is really struggling at the moment but hearing from others has been helping her to know she is not alone. I am sending you and Jace a big hug and will keep you in my thoughts and prayers. Carol