On my 21st birthday I saw a post on Instagram that told me to appreciate this time because my body will never be this young, this energetic, this useful as it is now. I have a connective tissue disorder called Ehlers Danlos Syndrome (EDS). EDS is multi-systemic and chronic which means it is everywhere, all the time. Connective tissue is essentially the glue that holds your body together and mine doesn’t work properly, meaning I experience chronic pain and fatigue on a daily basis, alongside problems in several systems of my body. 

Fatigue is like being trapped underwater; you are moving very slowly, but you can see everything going on as normal, not very far away

Statistics vary, and research is advancing but there are still many misconceptions surrounding the genetics of EDS. A really useful account on Instagram is @cortdoesscience, who is a PhD researcher in EDS and has the condition herself. EDS is genetic, so I was born with it, but I wasn’t diagnosed until I was 17. There are 13 different types of EDS, and they affect each person differently. My type of EDS is called Hypermobile EDS (hEDS), it is the most common type and is currently being researched to find the gene that causes it.

EDS causes dislocations, (the joint fully comes out of its socket), and subluxations, (the joint partially comes out). I’ve developed comorbidities like Postural Orthostatic Tachycardia Syndrome (POTS), a dysfunction in the autonomic nervous system that makes me feel like I am always going to faint. This is where the part of your brain that regulates the involuntary functions of your body, like blood pressure, heart rate, temperature, digestion, does not work properly.

Ask me anytime and I will be waiting for an appointment, test results, a consultation. It is hard to find doctors who take EDS seriously. I have had my condition explained to me in a different way by almost every doctor I have seen; medical knowledge of EDS is poor. I was told to ‘google it’ when I was diagnosed, and fell down a rabbit hole of potential things that might happen to me: irreparable dislocations, hernias, ruptures, spontaneous allergic reactions. 

There is a pretty steady split between doctors I see; one doctor considers EDS a very benign condition, while the other plans my day entirely around my symptoms. I never know what kind of treatment I am going to receive, whether a doctor is going to hear me out, or completely dismiss me. Doctors often tell me that my condition can actually be beneficial to some people (I’m yet to find anyone who has felt any benefits). This did not make me hopeful, it made me think I had failed.

Websites like The Mighty and The Ehlers-Danlos Society made me feel more comfortable. When I couldn’t resonate with what my doctors were saying about my condition, there was a community online that had felt the same dismissal. It is so important to have a support network to share your experiences with and receive helpful advice. 

I have symptoms I did not know I could develop; I take medications I did not know existed

EDS is unpredictable; new symptoms pop up that could be flare-ups (temporary increases in symptoms), or my new normal. It’s hard to stay sociable, to get my work done, to feel positive. My body is in charge (mostly) of how much I am able to do, and I don’t get to argue with that. I was not told about the complications; I have symptoms I did not know I could develop; I take medications I did not know existed. Receiving educated care from an early age would have saved me a lot of injury and self-gaslighting. 

Because my illness is ‘invisible’ I have to get creative with explaining it. Pain is easier to describe than some of my other symptoms. Pain tends to have a location and it can stab, sting, radiate, pulsate, ache; it is present. Fatigue is a lot harder to describe. It is a lack of something. Fatigue is like being trapped underwater; you are moving very slowly, but you can see everything going on as normal, not very far away. You find that the only word available for this feeling is tired, which people usually preface with just. I have to be my own advocate for my condition because disclaiming it to people often means explaining a condition they have never heard of, and might not believe is real.

Chronic illness takes something away from you all the time; you lose confidence and trust in your body to get you through things. There is a lot of language of guilt and grief in the chronic illness community. I think a lot of this comes from having to cancel plans and not being as productive as we are told to be. But I think the guilt from young people in the community also comes from the simple fact that we aren’t feeling the way we should be feeling in our twenties. 

…leaving behind some of those self-imposed expectations […] as you are not the idea of the person you think you ought to be

This time is sold to us as a time to be growing; our social circle, savings, long term relationships, more and more work. We are so occupied with expanding that losing anything feels like a huge failure. Being young with a chronic illness is very difficult because I am often comparing myself to others my age, comparing how sociable I am, how successful. I think this is something we can all relate to. Because my illness will always win the argument, I have to accept that I cannot always meet the expectations I have set for myself. I don’t think this is always a bad thing, because leaving behind some of those self-imposed expectations makes room for yourself as you are not the idea of the person you think you ought to be. 

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