If I see one more Pinterest blurb about “Here’s How I Cured My Fibro/ME”, “Eat This To Cure Fibro”, “How So and So Beat Chronic Illness” “Wipe Out Chronic Pain” ETC. I just may puke. It’s called Chronic Illness for a reason: it WON’T go away. I can’t cure it, fix it, help it or get better (trust me, I’ve killed myself trying). It has brought me to the brink of my sanity and to the floor of desperation. Every. Single. Day of my life is a battle and alot of times, I lose.
That is not, however, to say that I don’t recognize how incredibly Blessed I am. I have the bestest Husband in existence, three awesome kids, some kick ass close friends and a home. Oh, can’t forget my fuzzies. I am grateful to be alive and I have hope.
BUT, this chronic life is far from easy and I want to make that clear. Giving up eggplant and peppers didn’t cure me. I’ve been to dozens of Doctors, Specialists and have the good fortune of living in Massachusetts, where some of the greatest Hospitals in the world exist. None of that has mattered. I gave up meat and forced myself to try eating it again. We’ve tried anti-malarials , Epilepsy drugs and low dose chemotherapy. I’ve been on 21 prescriptions a day and only got monumentally sicker before realizing that drugs are not a cure and often make me far sicker than just my illnesses.
So let’s be clear about some of the statistics, the things they DON’T tell you about or talk about. The things that any Chronic Illness Warrior thinks about, but never really hears about. The truths that only validate and reaffirm what we feel and know in our hearts and minds. Here are some of the real things they don’t tell you:
According to Professor Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University: “[ME/CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.”
According to Health Rising: a 2008 analysis of several dozen studies found that “like ME/CFS, Fibromyalgia is more functionally impairing than ANY disease it’s been tested against”.
In a study by Frederick Wofe, Brian T. Walitt and Robert S. Katz, in 2014, 34.8% of Fibromyalgia patients are on Social Security Disability Insurance.
According to the Dubbo and Taylor Studies: only 5% of adult Chronic Fatigue patients ever recover, with 2/3 continuing to be symptomatic after ten years. Patients diagnosed at an older age have even lower recovery rate of only about 2%.
The suicide risk among Fibro patients is TEN TIMES that of the general population ***in people with no medical history of depression or other psychiatric illness***, according to Psychology Today.
So when I write, I refuse to sugar coat this life or cheerily discuss how I cured myself with Ginger Tea (insert eye rolls here). That only makes things worse and introduces the destructive, invalidating thoughts of “why can’t I make myself better”. This Hell is real, it’s awful and it’s scary. I wish I had someone here to tell me all that would happen seven years ago. I wish I had had a clear, genuine and honest perspective of what to expect-especially mentally. That’s why I write. I don’t write to whine, complain or elicit “poor me’s”, I do it to discuss the goods (They DO exist), the bads and the uglies of living a Chronic Life and hope that my experiences may somehow help someone else. Because we aren’t alone. We are strong. And this fight is real. Never undermine how difficult this fight is or all that comes with it.