At the end of 2014 I was diagnosed with Ehlers Danlos Syndrome. This was a suspected diagnoses for quite a while but due to its rarity and doctors lack of knowledge of EDS the diagnoses period was a lengthy and frustrating time for me and my family. Many doctors do not have an understanding of EDS and this caused me to have to see multiple specialists in the same field before seeing a knowledgeable Geneticist and Rheumatologist who confirmed my diagnosis.
In some ways it has been a relief for me to have an explanation as to why my body is reacting in the way it is but also brings a lot of overwhelming emotions to deal with as EDS is a life long illness and usually symptoms worsen as time goes on.
I do work very hard to remain positive and see the good side of every situation, and despite the constant pain and symptoms I have to deal with, I still like to see myself as someone who goes out of their way to be there for others during difficult times and support individuals going through similar journeys to my own.
I now rely on an electric reclining wheelchair, this is a vital aid to my mobility and independence and ensures I can be safely handled when I have a seizure so that I do not cause more damage to my joints than is already present. The electric component of the chair means that I no longer have to self propel and use precious energy. I was really suffering with more shoulder dislocations and wrist pain when I was self propelling but since moving to an electric wheelchair this has lessened. Any relief from symptoms is really important to me to manage my pain effectively without over using opiates as a means of pain control. It is vital tomy emotional well being that I am able to get out and about and have a level of independence that any young adult craves.
Ehlers Danlos Syndrome will always be a part of my life, but it will not be me. I am still the Chloe I always was and refuse to lose my identity to an illness!