I have not had the chance to complete exams or experience many milestones that teenagers and young adults have. I didn't go to a prom, travel or go to university. I did go through a sort of grieving process because of this for the life I felt I had missed. Now I have had such complex health issues for some time I have adjusted to the different path my life has taken, but there are times I feel very frustrated that I cannot do the things other people my age do. When I am in hospital for long periods of time I find the isolation very difficult. I have lost many friends since this decline and that caused me to question myself and my worth.
I now am very lucky that I have changed my mind-set in regards to lost friendships etc. I have some fantastic friends and the most wonderful partner! I refuse to feel upset that many people lost touch, it is a difficult situation and not one everyone can deal with it. I am just grateful for the current wonderful people I have in my life, and their dedication to our relationships. My social life has changed, but I am content with how things are. My Valentine's Day for example was perfect: I was in hospital but I was with my partner and as long as we are together it doesn't matter. Again, it's about learning to focus on the small positives and being grateful for what I do have.
I have also found great comfort in talking to others with chronic illnesses via social media and many of those people also have EDS. This really does help me feel less alone and when the going gets tough that is hugely valuable. For this reason, I set up the group 'Unique and United' on Facebook for 13-30 year olds with chronic illness/disability last May. With over 400 members now it has been a huge success and provides a safe space for those with chronic illness to support one and other.
Finding out about my dream:
To have my dream granted is difficult to comprehend. The severity of my condition means my daily life is filled with lots of bad news and although I do my upmost to be positive it can be extremely disheartening. To have my dream granted would be the most incredible feeling. It is validation that I matter, that my feelings matter and that I deserve to have experiences that I enjoy away from the medical whirlwind of day-to-day life. I can't imagine the excitement I am sure I will feel and I am so grateful to Dreams Come True for working so hard to help young people like myself. I do all I can to create as many happy memories as possible, working hard to reach my own goals and dreams. Any help doing that is a huge blessing!
My advice for others living with rare conditions:
Living with EDS isn't plain sailing and there will be blood, sweat and tears! There will be days you feel angry, resent others, grieve for the life you may have once had and for lost opportunities. There will be times you can't possibly see how to carry on. This is totally okay, feeling upset is not a sign of weakness and it's so important to be honest and open about your feelings. I have found it really helpful to be completely honest and open with people about my condition. With secrecy it is so often associated with shame and embarrassment whereas when you are open and honest, people see things as they are very matter of fact and it is much easier that way.
You know your body best and you are your own biggest advocate - you are also in charge! Don't be afraid to challenge doctors or medical professionals if you do not feel happy with a suggested treatment plan or if you feel you are not being heard.
Be kind to yourself and do not base your current ability levels on the capability levels of your past. I think the biggest thing is to take each day a moment at a time and make the most of it. You are still you. EDS can change your health but it cannot take away your personality.