I sit, teary eyed, reading all of your comments and emails every day. They break my heart and resonate like a loud bell with me and my own struggles. I could be writing these myself. I hear from women (no men just yet) who feel inadequate, stupid, guilty and broken, some on the verge of wanting to become a recluse (I can really relate to that one!!). Multiple women are going through divorces. On Instagram, I have followers who comment about how difficult it is just to “hold on”. I want each person who has commented to know that I hear you. What’s more though, the other readers hear you too. And the stories all sound eerily similar. Our illness has our entire lives in shambles. Why is it that getting sick, a choice that none of us willingly make, leaves us feeling horribly guilty and inadequate? Isn’t just being sick punishment enough?
I read this blog post well over a year ago and it has always stuck with me. Fed Up With Fatigue was interviewing a Social Security Disability Attorney about ascertaining Social Security Disability. You can find the original post and read it here:https://fedupwithfatigue.com/fibromyalgia-disability/
What was mind blowing about this post and interview was not how to secure benefits. It was the description that the Attorney, Jonathan Ginsberg, gave of what a “typical” Fibromyalgia sufferer was “expected” to look like when presenting to a Judge. Lazy? Incompetent? Stupid? Worthless? Inarticulate? Ahm, nope. “Judges expect a certain type of claimant-the classic profile is a “type A” female-usually in their mid to late 40’s with a very strong work history. Typically this person is an overachiever, often ending up in a job that would otherwise require more education or work experience than what (his client) has.”
So as we sit and berate ourselves over not being strong enough to fight or stave off the disease. Think of this. The classic Fibro patient a Judge expects is a hardworking overachiever with a type A personality (a lot of us are perfectionists). People who take responsibility for themselves and their actions. So why can’t we “will” ourselves better, fight through the pain or toughen up? Because getting sick IS NOT A CHOICE. If any of you had the choice, is this what you would have chosen? I can’t imagine anyone choosing this.
And this is where I was heading. Our disease is awful. It destroys a lot of lives. It can destroy families, careers, relationships and livelihoods. But we are so much more than “just” sick. Every day that you get up and fight again, you win another day. We are still Wives, Mothers, Daughters, Sons, Husbands. We are still important and valid. We can and will still contribute and make a difference in this world, just by being here. We deserve respect from those that surround us and we should expect nothing less. There is still joy, love and happiness that can be experienced, despite the pain and desperation. Respect yourself. Respect your sheer will to continue to fight every day. And give yourself the credit you deserve for doing so. You are worth it and your life is worth it.
If ever you feel you need help, please reach out:
National Suicide Prevention Lifeline: 800-273-8255
Crisis Text Line: Text HOME to 741741 to have a confidential text conversation
Find a Therapist locally using this link: Psychology Today Find a Therapist
Comes The Dawn
After a while you learn the subtle difference between holding a hand and chaining a soul
And you learn that love doesn’t mean leaning and company doesn’t mean security
And after a while you learn to understand that kisses aren’t contracts and presents aren’t promises
And you learn to accept your defeats with your head up and your eyes open, with the grace of a woman, not the grief of a child
And you learn to build all of your roads today because tomorrow’s ground is too uncertain for plans and futures have a ways of falling down in mid-flight
And after a while you learn that even sunshine burns if you get too much
So you plant your own gardens and you decorate our own soul instead of waiting for someone to bring you flowers
And after a while you learn that you really can endure, that you really are strong and you really do have worth
And you learn and you learn
With every goodbye you learn
All my love, Stacey