Life with Ehlers-Danlos Syndrome – Katie Morgan

You probably heard of, or know someone who is “double jointed” which is also known being hypermobile. In some cases, being hypermobile can cause pain and injuries and can also be a sign of Ehlers-Danlos Syndrome.

You can experience pain, subluxations, bruising easily, stretchy skin, unstable joints, fatigue, fast heart rate, dizziness, digestive issues. Your muscles are always overworking to hold your lax ligaments in place and joint injuries are more common if your muscle tone is weak.

There are 13 types of EDS and I have the most common one – the hypermobility type. This is my story and experience of growing up, getting diagnosed and learning to live with this life long condition.

I’ve always had aches and pains ever since childhood, something I was repeatedly told must be growing pains. I would often twist an ankle or a knee or pull something when doing sports but again, this was put down to being clumsy. It wasn’t until I reached my teenage years that I started experiencing chronic pain that was affecting my daily life.

Living with chronic pain that seemingly had no cause was difficult. It impacted every aspect of my life. I was missing school and falling behind with my work. My ability to socialise was also affected, and maintaining friendships became difficult because I was missing out both during school days and outside of school and I was so exhausted on days when I did go into school that I felt withdrawn, depressed and anxious.

I just couldn’t maintain friendships. I worked hard at my schoolwork but the fatigue and missing lessons made it difficult for me to keep up and this was especially hard during exams which included work that I didn’t learn and exams are at a set time so I had to work through the pain if I was having a bad day. All of this started affecting my mental health,  I still didn’t know what was wrong with me and I felt so alone, as if I was the only teenager who was experiencing this.

I was first diagnosed with fibromyalgia, another chronic pain condition that was likely triggered by EDS in my case, when I was 16 years old and things were finally starting to make sense.

I wasn’t making it up, it wasn’t all in my head and other people had this condition too. Although I was finally getting support and treatment for the fibromyalgia, and people had stopped doubting me and my pain, I wasn’t diagnosed officially with EDS and POTS (a secondary condition to EDS in my case) until I was around 21.

When I got diagnosed everything finally started making sense. The symptoms I had as a child, which never lined up with fibromyalgia, finally made sense. I felt like I was finally validated and it helped me to heal mentally from the trauma I experienced and the self doubt that was always in the back of my mind.

Another thing that really helped me was finding the online community of chronically ill people which included many young people like myself, who had similar experiences.

I finally realised that I wasn’t alone and that these experiences were not just my own but something young people across the world had dealt with. Some of these people had the same conditions as me, some had other condition but we all had similar life experiences which was incredibly validating for me.

I made friends with other people online. People who I could talk to about things only we could understand. Those friendships have helped me through very difficult periods of my life and I’m still in touch with some of them now.

Raising awareness of conditions my Ehlers Danlos Syndrome is so important. It can reach other people who may be struggling with the same thing, or a similar chronic illness. It also makes people more aware and helps to educate the general public and may help parents to recognise the early signs in their children.

This is why I’m sharing my story. I want to raise awareness and let people with EDS or any other chronic illness, mental or physical, that they are not alone and their experiences are valid.