My story – Ayeesha
I started with signs of EDS while in infant school, obviously at the time being so young I thought these things were normal, however as these symptoms began to increase and started causing chronic pain i started to understand not everyone feels like this. I am one of many family members who have this condition, my mum also being one of these. She has helped me through all aspects of this condition and has supported me whether it be with things that have helped her manage throughout the years or just by coming to endless hospital appointments and standing up for me when I couldn’t.
As I get older I learn more everyday about EDS and its comorbidities, whether that be from organisations like Ehlers Danlos Support Uk or just through social media where other people share their stories. I suffer with many comorbidities, and the hardest part about my journey has been navigating appropriate diagnosis and treatments. I am awaiting my first surgery for gastrointestinal problems and this has being the hardest problem i have had to face, it had an impact on my education and the pain has prevented me getting a job and moving forward with my life, however remaining hopeful is the key to dealing with these problems as one way or another i always believe there is light at the end of the tunnel.
Top Tips For Managing Symptoms
Managing EDS is hard and no matter how hard we try we will always have our good days and bad days. Everyone’s symptoms are different and everyone uses different strategies to cope with them, however being able to pace yourself to prevent symptoms being worse is a big part of managing. Finding what works best for you to help manage is the best way forward and trying new ways to help yourself is crucial because you know your body better than anyone.
I struggled greatly in school and for the most part that was due to my mental health. After taking a break and then leaving mainstream education I was accepted into a PRU school, for me this was the best change and also helped my physical health so much. They understood my needs, and accommodated them greatly and I managed to get a few qualifications due to their help.
The best advice i could give to someone struggling is don’t push yourself beyond what’s reasonable, try your best but listen to what your body needs because your health is a priority, if you need a break or a change do it because in my experience it will benefit you greater than pushing yourself, although we need to push ourselves we also need to understand what our physical and mental limits are in order to not cause more pain or damage than needed.