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I was 19 years old when I was diagnosed with hypermobile Ehlers-Danlos syndrome [hEDS]. This was an extremely difficult period for me as I was also in my second year of university studying for my BA Honours in Early-Childhood Studies. I was fortunate to have a smooth diagnosis; I was examined by a rheumatologist who spotted the hypermobility in my finger/toes: he was made aware that my cousin also has Ehlers-Danlos syndrome.
I felt a heavy weight on my shoulders, I was trying to battle through university as well as a chronic illness I had no control over. The constant chronic pain and fatigue made me feel weak and vulnerable: not only did I have to study I also had to adapt to the physical and mental changes of my body. Due to my circumstances I had to study from home, as commuting to university was difficult and I was physically unable to take public transport. I was treated at University College London Hospital (UCLH), Where I had Hand Therapy, Physiotherapy, received joint supports, and further examinations. UCLH was, and still is my second home. The treatment for me was to a high standard so I cannot complain. I will never forget my physiotherapist who was supportive and encouraged me to complete my studies.
When you have EDS you feel isolated, it is as though you are in your own world. People tell you they understand but you think that is not the case, and that they have to experience it to know. Every day you wake up and think “I would never know what having no pain feels like again” your joints hyperextend even when you do the simplest activities. I constantly feel tired due to the chronic fatigue, and the chronic pain is never ending, to the point where I cannot leave the house sometimes.
A couple of months after I was diagnosed with Ehlers-Danlos syndrome, I was also diagnosed with Postural Tachycardia syndrome (PoTS). Learning to adapt to Ehlers-Danlos syndrome is a challenge. There will always be something new along your journey which you have no choice but to deal with. This is what makes me strong and determined as a person. You have to ensure you do your research and enable yourself to gain knowledge to allow yourself to feel more in control of EDS.
In 2018 I suffered a subluxation to both my ankles. I was sitting in a park with my legs crossed prior to switching different positions, on the grass where I felt comfortable. When I tried to stand up my feet went numb, I could not feel anything. When I looked down at my feet all I could see was my ankles bending inwards, then I went back to the floor. This resulted in me going to A&E being wheeled around in a wheelchair, then on to crutches. I spent 6 months using the crutches which made me feel vulnerable, especially as it was my first time using them. Being in public was overwhelming, and I needed places to accommodate me. I feel the public are more considerate of me when I use crutches. One thing I learnt is the importance of empowering invisible illnesses, and the importance of society knowing that just because you cannot physically see a disability is does not mean an individual is able-bodied. “Don’t judge a disability by its visibility.”
I slowly started to lose confidence, and was not as sociable as I was in the past. I was referred to a pain management programme at the UCLH National hospital for Neurology & Neurosurgery, where I was able to meet people with Ehlers-Danlos syndrome and other chronic illnesses. The practitioners taught us how to create mindful thinking, and how to set and achieve goals during the course of the month. I related to more people and set myself different targets. One of my goals was to socialise more with different people. When you’re so immune to staying inside, you become lost and gradually stop connecting with people which can affect you mentally. I was taken to the pain management class by hospital transport, at the time I was still using crutches. I remember one of my other goals was building strength again so I did not have to rely on my crutches all the time, therefore I did my physiotherapy exercises every day and attended hydrotherapy which allowed me to gain a bit more strength. At the end of the pain management programme I managed to take public transport without crutches to my last session, which may seem small to some but was an achievement.
My joints still continue to come out of place, but as they say “the show must go on” and by that, I mean completing university. The stress of this increased the pain: I felt mentally and physically drained. I wanted to give up, it was all just too much for me. I was lucky enough to have a disability service at my university so eventually they were able to support me, especially as I was going into my third year.
I will not let Ehlers-Danlos syndrome define me, and even though life can be a struggle, just know you can do it. I’m Toyin, now 24 years old, with a degree in Early Childhood Studies.Tags: Coping, Diagnosis Journey, Ehlers-Danlos syndrome, hEDS, hypermobility, Pain, pain management
Categorized in: Stories