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Daisy's Diagnosis Journey: We Are Not Alone

In May 2020 like so many lives, my life changed in ways I could never have imagined. Living undiagnosed feels like holding your breath underwater, every part of you wants to scream in desperation, to fight for freedom but no matter how hard you keep fighting, the next breath just gets further and further away. In May 2020 I was diagnosed with M.E./CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) after five years. Five years of struggling, searching, and holding on.

When you have such a powerful drive in you to not give up and you don’t have a reason to stop or a reason why you’ve lost your health, life can quickly become a race of avoidance. It takes so much to surrender and to show your true vulnerabilities, to stand firm and say I can’t. I am unable to do what I used to do, to function as the old me did. To let that wall down and to admit that this is how it is and not necessarily how you want it to be. It took me 5 years to reach the point where acceptance is no longer a weakness of mine, but instead a strength. Getting the diagnosis of M.E. gave me the ability to truly accept and validate my own experiences, to find the Chronic Illness and M.E community. For years I chased what I thought the world needed me to be; healthy again. Today I now know that hiding in the darkness of the past and what could’ve been is not living. That being a light in the darkness of the world is a rare and beautiful gift, and sometimes to appreciate what we have, we have to accept how things are first. Living with a chronic illness is not a choice but you can choose to find what makes you feel like you’re living.

The Chronic Illness and M.E community have changed so much of my life. From years fighting as a lone warrior, desperately hoping for a cure and validation, to fighting as an army. A community of strong Warriors together as one, supporting and working towards a better, more inclusive future. Accepting that you have a chronic and possibly life-long condition, that a lot of doctors don’t understand, is a learning curve and a challenge but it’s not impossible. I found my acceptance through the Chronic Illness Community and found my purpose through my voice. 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/Chronic Illness is a learning curve that takes patience and time. Having or not having a diagnosis doesn’t change the validity of your experiences and no matter how lonely the fight may seem, you are never alone. Lots of Love & spoons

Daisy Hannah @daisy.hannah.dunne

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