Like many people, the coronavirus pandemic has affected a lot of my daily life. In March I was about to start a new job and was going through Graded Exercise Therapy (GET). As I’m writing this now, that feels like a lifetime ago.
Being chronically unwell and undiagnosed for 5 years is one of the hardest battles I thought I’d ever face. In May (2020) I got diagnosed with M.E. and a lot has changed since then.
Getting a diagnosis of M.E. or any Chronic illness isn’t easy but one of the hardest things to face is what comes next. M.E. is such a complex and misunderstood, multisystem disease, that even getting a diagnosis comes with attitudes, stigma and well, no treatments. It can feel as though you’ve just somehow been made more invisible than you already felt when undiagnosed.
It took me a while to realise that M.E. is just as valid as any other condition or disease, either because of imposter syndrome (self-doubt) or because finding the answers and studies are hard for anyone, even without Brain Fog! (cognitive difficulties). Accepting that you have a chronic and possibly life-long condition that a lot of doctors don’t understand, is a learning curve. I found my acceptance through the Chronic Illness Community and found my purpose through my voice and creating resources to support others.
Everyone finds acceptance differently and it will always be a battle but please remember;
We are invisible not because of our conditions but because people refuse to see us,
We are voiceless not because we don’t have voices but because people refuse to hear us,
We are alone not because we are housebound or bedbound but because people refuse to understand us.
Acceptance and all stages of living with M.E. is a learning curve and there is no right or wrong way to manage or cope with M.E. before or after diagnosis.
Lots of Love & spoons
Daisy Hannah @daisy.hannah.dunne