What I Wish The World Knew About ME/CFS & Other Chronic Conditions4
I wish the world knew how much I fight for my health each and every day, every hour, sometimes every minute.
I wish people understood how much I deeply desire to be well, and that I would give anything to have a normal life and not have to worry about what my body is going to feel like every day or every hour often.
I wish you knew what “being tired” really means for someone with ME/CFS: it is not being “tired” as in being sleepy. It is feeling “tired” as in “I’m so tired, I can’t even breathe.”
I wish people knew how much I try to have faith in my body to heal and function normally. I do everything I can to be well. The battle often feels insurmountable, but I never stop trying to feel and do better so I can live my life and dreams.
I wish people knew how much the comments and judgements about me hurt: I am not lazy or unmotivated, or any other of the careless judgements cast my way. I probably know more about health than you do.
I am an advocate for my own health. I am not sitting idly by, hoping for a cure. I am seeking and blogging and searching for answers…endlessly.
I wish you knew the immeasurable losses I have suffered as a result of not feeling well. I wish you knew the loneliness I face on a daily basis, being isolated…
I wish you knew I am a warrior for my health…each day, every day…I will never give up trying to find answers and feel well.
The worst thing about chronic illness is the isolation and it’s a viscous cycle. When I first experienced health problems in my early 20’s I knew it would cause misunderstanding between me and others. I feared being judged and misunderstood for having to take it easy – whether in my work or personal life. Fearing judgement only made it worse, but the judgement and isolation are real. It’s a viscous cycle too: the more I am judged – or feel I am judged – the more I pull away and isolate myself even more. The loneliness that ensues is almost unbearable. I don’t consider myself a victim. I know I have unique circumstances.
What I wish people knew is how hard I try, and how much I crave love, compassion, open-mindedness, and most of all connection. I wish people would reach out to me more to ask me how I am doing. I wish I had the courage to reach out more too. The loneliness of being isolated from a chronic condition has been the hardest part, worse than the symptoms themselves. What do I wish? I wish for freedom from fear, pain, fatigue, loneliness and suffering. In the meantime, I wish you would ask me how I am doing every now and then, and maybe offer to share a cup of tea with me.
I wish you knew how much having a chronic condition has changed me and shaped me. It has made me brave and strong, empathetic and compassionate.
I have learned how to be kind, non-judgmental, and compassionate toward others, as I wish for them to never experience the kind of pain and suffering I have.
I have not only learned how to be kind and compassionate, but I have learned wisdom, and how to be deeply present for my life and my body no matter what I have experienced.
I wish you knew that I have learned how brave I truly am…All hail the underdogs…
Are You a Wellness Warrior? Are You Getting The Support you Need to Truly Thrive?
Loneliness is becoming an epidemic, and we are more isolated than ever these days. Loneliness can lead to or exacerbate health issues as well.
Connection and Social Well-Being are the missing pieces in well-being, even if you are facing a chronic condition. In fact, it is even more crucial you get support if you have a chronic condition. I meet so many people who have become isolated due to their health challenges.
No matter our circumstances, we all need support. Chronic illness can be very isolating. Click here to learn more about how you can get the support you need to thrive along the way: http://weheal.org/
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About the Author
Edie Summers has positive recovery from ME/CFS and is a tireless advocate for those facing chronic conditions such as MS, RA, ME/CFS, Lupus, Fibromyalgia, Cancer, etc. Her goal is to empower as many people worldwide who face chronic conditions and to inspire true well-being no matter what the body experiences. She is the author of the book The Memory of Health, to be released in the spring of 2016. The Memory of Health details her personal journey through ME/CFS and how she tries to live each day with as much mindfulness as possible to cultivate well-being in mind, body, and soul. Her comprehensive book also covers environmental toxins, theories of ME/CFS and chronic fatigue, self-care, stress management, positive psychology, and much more. It is designed to be a resource for well-being and to live well with chronic illness. You can find it here:
She runs these Facebook support pages: