Mourning Your Lost Life — Becoming a Survivor or Fibromyalgia

When sat down by a doctor and explained that you have an incurable medical condition that could become completely debilitating to you, cause you daily pain, and change every aspect of your life, you die. Your physical life has died, your career has died, your ability to care for your family has died, your ability to enjoy the intimacy between yourself and your partner has died. But your lungs still breath air, your heart still pumps, and you must create a completely new life in spite of your medical conditions. If you're lucky you have a good medical team to assist you with changes regarding your health and what you need to do to really take care of yourself, but many of us don't get that. And the fight begins, to find the right doctors, therapists, friends and family to make up our new support system.

This journey into this new, strange, and painful life is fraught with challenges. Trying to get our friends and family to understand what we are going through and trying to understand it ourselves. Trying to find doctors who will help us. Trying to work, take care of a home, be there for our family, still be a friend, hobbies, interests ... and let's try to do all of this while your body is literally spiraling out of control. This journey isn't easy, depression and anxieties set in. We turn in on ourselves. We stop doing all the things we used to love. We turn away from those who care about us and need us. Our pain grows. Each day is filled with challenges that we can't understand, we are tired of facing, and we just want it to stop. We lose everything from our old lives. We need to mourn our old self. That person no longer exists, and that person isn't going to come back. That person died the moment the symptoms started to affect your daily life.

You need a way to mourn the lose of that person you used to be. Psychologists say there are steps in the grieving process. There are no rules to grief, no steps or stages except our personal journeys which are unique to only ourselves. It will take us as long as it takes us. But at some point we need to let go. We need to live in the present and leave the past where it the past. Perform a memorial service for your old self, set up an alter, write a letter of everything you feel about your old self - and burn it. Give yourself permission to scream and cry; gut wrenching and messy. Do it, do something, just do it.

There has to be a life waiting for each of us after fibro. I honestly believe that the challenges and trials we face in our lives are for a reason. There is something that we must do. Research and find the perfect doctor, reach out to others, set up an organization that helps fundraise for research, work on education of the public or maybe just your friends or family. It doesn't necessarily have to reach a large nationwide audience, but there has to be something. We never know how we are going to really affect those that come into our lives through blood or choice.

We need to embrace our new normality. Stop being afraid to ask for help. And be grateful for each and every little thing we have in our lives because there is always someone out there who has it worse. We are blessed for all of the things we have in our lives; we need to concentrate on those. Meditate on them. Find what you need to help put your body in a state of peace: cold/hot packs, aromatherapy, water therapy, acupuncture, medications, music, yoga, meditation, deep breathing. The options are truly limitless, we just need to find what fits us. What works for us.

We cannot allow fibromyalgia to become our identity. We are so much more than that. It's just one piece of our puzzle. Yes, we suffer from fibro, but we are also parents, children, grandchildren, partners, lovers, friends, co-workers, educators...fibro is not the end all, be all of our existence. We cannot let fibromyalgia run us over and take our lives away from us, we are not the victim of fibro...we are the survivors of fibro. We need to remember this. Every day that we wake in the morning, put a note on your nightstand or on the bathroom mirror so you'll see it first thing in the morning. I am a survivor!

by: Caleen Martin

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Published in Senior Health


  1. katelin

    Thanks for sharing this with us, Kat. This explains the condition so well, for many people who may not know much about it. .. I know how difficult this is for you to deal with every day, my sweet friend. (((hugs))) xx

  2. Catraoine

    Only someone who ‘knows’ can write as you have. I have run and am about to restart a program for people living with Chronic Pain ( The Invisible Disability) It is people such as yourself that make me more determined to keep these programs alive and well. Thank You.

  3. Lina

    Written with an understanding that only a sufferer could bring…. I hope this helps people who come in contact with this terrible disability to learn that there can and should be life beyond the disease itself. Your courage is wonderful to see and I sincerely hope that your support system is always there for you. (((((((((((Hugs))))))))) Lina xxx

  4. leafofgold

    At least so far you haven’t lost your smart ass sense of humor. I can identify with the betrayal of my own body. And I get angry too. Thanks for this blog. Now let’s go zip lining !!!!!