Pain, spots and loss of energy were the main symptoms that rapidly deteriorated my mobility and quality of life at age 10. The symptoms that didn’t add up, that confused every doctor at my surgery- and countless specialists in numerous hospitals afterwards.
5 years after my symptoms first flared I was finally diagnosed with Ehlers-Danlos Syndrome, a chronic illness which explains the constant pain I am still coping with today. There is a defect in my collagen, the tissues that make up our bodies. But a diagnosis shouldn’t be necessary for a child in pain to be taken seriously. A few latin words or the name of some doctor shouldn’t be a reason to believe somebody, no matter what age or how they look. Everyone deserves to be believed. I was misdiagnosed many times and thousands of people out there are still searching.
I was ‘lucky’ to be given a diagnosis. Several, in fact. Chronic Fatigue, Dyspraxia, Anxiety, POTs, FND and more had been added to my list by the age of 18. But these are just words, meaningless labels. I don’t want to live my life inside boxes, I don’t want to be defined by my health, I only want to be myself. Perhaps it would be different if a diagnosis meant I could be given help but I was told there is no treatment.
Diagnoses mean nothing in a health care system that assigns specific doctors for each symptom who don’t confer with each other! And you’re ‘lucky’ to be given diagnoses, to get an appointment at all, let alone one that actually helps relieve a symptom! They told me there is no treatment when in reality they just don’t know how to treat the body as a whole. Medication is not and should not be the only solution. For many it is not a solution at all. It is not a chronic/rare disease only issue. A broken leg can affect your mental health. Nutrition can help acne. Everything is connected!
There are SO MANY treatments. Diets, vitamins & supplements, fixing your sleep routine and finding an exercise regime that suits you. Surrounding yourself with friends and family who understand, learning to pace, learning your limits, learning to be kind to yourself. There is so much hope that was not given to me when I needed it.
So, this is what I want Tea with HB to be. A place where hope can be discovered. A place to question and to learn. A place to share information that we weren’t taught in school. Most importantly, a new reality. A place to just be. Listen to the birdsong, sip some tea and breathe.
If you have a story you’d like to share in the comments, I would love to read it.