By Lorraine Ansell
It is a good question and I get it quite a lot. Mostly from well-meaning medical professionals including doctors, from friends, family and everyone in between. I even questioned it before it became super necessary but more on that later.
However, it seems odd doesn’t it? To chase after a label when there is no magic pill or potions, no much that will suddenly make the pain and so much go away. You see, I have a connective tissue condition called Hypermobile Ehlers-Danlos Syndrome. I was diagnosed with this genetic chronic condition in my early 40s. After a lifetime of all sorts of issues with my tissues.
For many years, I unknowingly lived with this condition. And I believed the doctors and the medical tests and scans. My blood tests came back fine and all normal. So I lived with my bendy body causing all sorts of chaos and thinking that the flares of fatigue were normal. Life was exhausting. And instead of paying attention to my body, I kept pushing through the pain.
It turns out that having this condition exhausted me. I was already tired and couldn’t understand why my peers weren’t tired like me. It was lonely. There was a constant subtle every moment guilt of questions I asked my self like “Am I making this up? Am I weak? Am I lazy? It is all in my head?” That lack of a diagnosis caused a foggy relationship with myself and made every day activities even harder.
Getting the hEDS diagnosis didn’t cure me. It didn’t magically fix my knees, my shoulders, or the way my spine insists on being dramatic and curving. But it did something more important: it gave me a compass.
Today, I have validation that my symptoms are real. I wasn’t making it up and I don’t waste energy pretending I am ok every morning and instead listen to my body, acknowledging that it needs time, care and gentle movement.
Now, I have access to a network of hypermobile friendly practitioners like PTs, pain doctors, braces and supports, osteopaths, massage therapists, emotional therapists and much more. I am learning to work out what works for me and more importantly what doesn’t.
It gave me a language. Finally I could talk not only with others who shared this condition but with myself and therapists so that we all understand myself so much better. Now, I can tell people that I am “flaring” and we all get it.
I am so thankful that it also gave me community. With people that all get it and we can moan, laugh and cry together. Real people with their own real stories and suddenly I don’t feel so alone and stupid.
So what I am saying is that diagnosis for me isn’t a promise of healing or stopping the pain. Of course I would love that but I have learnt to accept that all of this is a complex journey. And the diagnosis is crucial because it gave me so much and most of all it gave me clarity. It gave me the tools and people to help me.
Having a life long condition that cannot be fixed is quite a thing to carry but having a diagnosis means being able to live as fully as possible despite what my tissue issues throw at me. Knowing that it is what it is means I can manage myself better.
And that is what matters – that is what makes it more than enough.
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Lorraine Ansell is a writer, content creator and speaker living with hypermobile Ehlers-Danlos Syndrome. She turns pain into purpose by crafting stories that heal, connect and shine a light. Her book, The Surrender Agenda, is part memoir, part manifesto with honest, witty stories that highlight the need to reclaim agency when your body is doing its own thing.
To dive deeper into her work and keep up with her latest experiences and insights please visit her website lorraineansellauthor.com.