Updated: Nov 15, 2020
I look very able-bodied, relatively fit, successful, privileged so most people would never think I was in pain, all the time.
I have grown up in a very painful bendy body and retreated into myself after experiencing the disconnection that comes with having an invisible condition. Similar to mental health problems, chronic pain isn’t always visible which can make it difficult for other people to understand. I don't blame anyone as they were doing the best they could with the knowledge and experience they had but I was often made to feel like or labelled as a hypochondriac, difficult, lazy...
I went through a really bad flare-up in my last few years at high school dealing with excruciating back pain, trying to explain this phantom pain to friends and family made me feel like it was all in my head, MRI's were done, blood tests were analysed. And nothing, no reason to be in pain. I shut off, stopped talking about what was going on and found coping mechanisms. Not healthy coping mechanisms may I add. This went on for years and my mental health deteriorated.
I was finally diagnosed with Hyper-mobile Ehlers Danlos Syndrome in 2018. There are 13 different types of EDS and they can affect people in different ways. For some people, the condition is relatively mild, while for others their symptoms can be life-altering. I would say I’m on the very high functioning side of the spectrum and for that, I am forever thankful. I can still hold down a job, exercise and live a relatively normal day to day life.
What tools I use to look after my mental and physical health.
Advocating for myself: If you are struggling with a physical or mental condition it’s important that you advocate for your health. I have seen so many doctors that have made me feel delusional. If this happens, know your rights to access different medical professionals for second, third, fourth opinions. Sometimes appointment can feel rushed and you can feel under pressure to try and explain yourself so write notes before and after your appointments. Detail your symptoms and ask for another appointment if there is not enough time in the one session to go over everything. Take someone to your appointments with you who you trust, Adam came with me to one of my first appointment with my orthopaedic surgeon, the doctor turned round to Adam surprised that he was there as most people who are dealing with symptoms related to hyper-mobility are often disbelieved by their family and partners. To be fair, I am very lucky with that. Adam has been amazing with all of the doctors' appointments, specialised and never once questioned my symptoms.
Pace yourself: conserve your energy, this is one I'm still working on. I often get excited when I'm having a relatively low pain day and go all out, smashing workouts and working flat out. I've realised that this can often leave me feeling depleted and ends up with me burning out and having to take several days to recover. Try and pace yourself, take brakes and remember that being productive all the time does not make you any more worthy.
Breath-work: Has been transformational, dealing with chronic pain I used to try and disconnect from my physical body, with deep rhythmic breathing I have been able to reconnect to my body. Breath-work practices can move us out of fight or flight state and into the rest and digest state. With my daily breath-work practice I have learnt how to consciously influence my immune system response.
Movement: Giving myself permission to try different things and be a beginner has been instrumental in finding movement that works for me. I had previously thought I had to just get through the discomfort and when I got fitter/stronger/slimmer/more muscular the pain would go away (I can't believe that was my mindset before). Now I outsource my training to a coach I see twice a week and I go to yoga class 2/3 times a week and modify whenever I feel any pain in a pose. I've retired a lot of the yoga poses I used to indulge in and now challenge myself with stability over depth every time. Moving regularly has been so important in keeping my mental health in check as well as my physical health so if I'm not feeling up to a workout or a yoga class I just put on a podcast and go out for an easy walk.
Let's take care of each other, just be nice eh.