Having a history of any illness is hard, but when trying to advocate that your symptoms are not due to your history is even harder.
Growing up I was that kid who was accident prone, sprained ankles, bruised, worked hard and played hard but would sleep for hours as an afternoon “nap”. I walked around with a fractured wrist for two weeks before doing anything – I was that accident prone no one believed me!
Despite a happy childhood, from the years of 2015 – 2020 I was under the Eating-Disorder services due to living with Anorexia Nervosa. I was admitted to inpatient treatment, attended a day treatment service multiple times and was told I was a “revolving door patient” and the outlook was looking “chronic”. Since 2020 have had a couple of blips but managed without intense treatment, and at the age of 26, I am in the best place I have been in a very long time – despite the stress and labeling I had, especially leading up to my Hypermobility Ehlers-Danlos (hEDS) diagnosis.
The year leading to my diagnosis and even now has been a continuous battle of having to explain how the symptoms I currently experience are not due to my “history” of diagnoses or medication. I live with symptoms, which would appear abnormal to some but when my observations are taken, I am able to explain what is and what is not normal for me.
I have been told that characteristics of hEDS I experience such as; stretchy skin, stretch marks, fatigue, bradycardia, low blood sugars and hypotension (that can also turn into tachycardia and hypertension) – may be due to the damage I had put my body through.
I am currently going through investigations due to increased episodes of tachycardia, hypertension, palpitations and pre-syncope, which started prior to diagnosis. I was told by my GP that if they continue, to attend A&E – of which I did and I was told that “given my history” it was most likely that I had become over-anxious due to my diagnosis of hEDS (6 months from the point of diagnosis), I was sent away with the advice to look to run, or meditate when I am in one of these episodes as it is “most likely anxiety”.
I am currently very grateful to have a GP surgery have not taken into account my “history” and have been working with me, and not against me. It turned out that these episodes are most likely not due to the impact of living with an eating disorder, but the investigations are still ongoing.
I luckily work with Occupational Therapists (of which I am also studying to become) and Physiotherapists which can provide me with some advice. I also have the skills/ knowledge from my work in the NHS that allows me to adapt/manage symptoms if need be.
Trying to manage a condition after two appointments with a Rheumatologist with the advice to “manage things as they come up” is equally just as hard – as I don’t know the answers to most things and I am still unsure if the symptoms I experience are damage, or hEDS related.
Despite the challenges I have faced, and how hard I have had to stand my ground to be heard. I have come out of this as a person who is not only assertive, but on a mission to spread awareness with SEDSConnective and reduce how many people this may be happening to as well.