As a 14-year-old girl who suffers with hypermobility, I have found living with pain quite difficult at times, but I have found many ways to deal/cope with it. I’ve learned that medication isn’t the only answer, as it doesn’t take my pain away completely and has some side effects. Alongside painkillers, I use heat packs and Epsom salts to ease the pain a bit more. With an injury, I use KT tape to hold the joint in place and relieve the pain. I find it difficult sometimes, both with pain and adaptations because I don’t like looking different from other people, so I try to adapt it in ways that are discreet and won’t be noticeable by people that aren’t hypermobile.
I wear boots to school and have orthotic insoles because my ankles tend to dislocate very easily, and boots help prevent that. Since wearing trousers, it has been easier to hide from people that I wear boots as they cover them. I also have passes at school to make it easier and more accessible. For me, it helps that I have friends who understand or relate to hypermobility too, as I feel I can talk to them about it, and they may have ways to help me if I have injured myself. I no longer participate in PE at school anymore due to the pain and injuries caused, instead I go to Student Support to do homework or have some time out. Since stopping PE, I have been in a lot less pain and it has been very beneficial, allowing me to do activities I know I can do. Over the years, I have tried many sports and have learned that swimming and roller skating are sports that are unlikely to injure me. I also like to do other activities with my friends too, like pottery painting as it is a simple, easy thing I can do that doesn’t cause me pain. Recently I did my practice Duke of Edinburgh Award expedition. They made adjustments for me to make it accessible - I left most of my things at the campsite so that I didn’t have to carry them during the expedition. Other things were adapted, for instance, I was allowed longer breaks. I had instant ice packs, heat packs, and physio tape in my rucksack to help if I was injured. It took a few days after to recover, but it was worth it. I now need to prepare for the real expedition!
It can be difficult that other people cannot see the pain, as I have had some terrible experiences with teachers in the past as they didn’t believe me. Following that, it made it very hard for me to tell people when I was in pain, so I made cards with the pain clinic, which I would show teachers to let them know. The pain has also caused me lots of anxiety – whether people believe me; whether it would get worse and having to tell people I was injured. I try to overcome this anxiety by telling people about my condition to help them understand and believe me. However, despite the difficulties, I am also somewhat grateful for my pain, as it makes me more sympathetic towards other people and I can help other hypermobile people like me.