Fibromyalgia: Stages of Grief from a Lost Life

Fibromyalgia Awareness Day is today.

FIBROMYALGIA is a REAL disorder. It affects approx. 11 million people worldwide (3-6% of the population). (Bartels EM, et al. (2009). “Fibromyalgia, diagnosis and prevalence. Are gender differences explainable?”. Ugeskr Laeger. 171 (49): 3588–92. PMID 19954696.) Those living with fibro wake up each day feeling like they have the flu and like they’ve never even been asleep. Symptoms include chronic pain, muscle pain, memory loss, skin sensitivity, dizziness, debilitating fatigue, sleep disturbance, and joint stiffness.  Fibromyalgia is considered either a musculoskeletal disease or neurophysiology condition. Fibromyalgia has been recognized as a diagnosable disorder by the National Institutes of Health and the American College of Rheumatology.

I am a fibro sufferer.  It literally took me years to be diagnosed.  After the diagnosis with fibro, I went into denial.  I could not have fibro, I had to work. I had obligations. I would not accept the fact that I had fibro.  I had only heard of fibromyalgia and did not know much about the symptoms, yet I was living with them day-to-day.  I sought out other diagnoses, ones that medicine could cure. The doctors turned out to be smarter than me, go figure.  I felt like I had lost my life.  I didn’t want to be “sick.” I would not be sick.

As family and friends tried to support me, I backed away.  This was just unacceptable and I was not going to have fibromyalgia.  The reality was, I had fibromyalgia and no amount of denial was going to change that fate.  In Elizabeth Kubler-Ross‘ book, “On Death and Dying,” she identifies the stages of grief.  I was about to become a walking testimony of her work.

Denial: I refused to except any diagnosis that could not be treated and cured.  There were days that I could not function and days that I had great hopes that it was getting better and I thought the doctors did not know what they were taking about.  Then, the bottom would drop out of my world and I would lay in pain for days getting depressed.  I rationalized these swings as relapses in what ever that doctors had failed to treat.  No way would I accept less from myself.  I was not going to be sick.

Anger:  As months went by, I got angry at myself for not being able to carry my weight at home and work became all that I could give my strength too because work had to go on.  Most of my time at home was filled with trying to recoup for the next work day and social life became impossible.  I was angry that time was slipping away.  I was angry at my body for betraying me, angry at the doctors for not knowing what they were talking about and angry that it had to happen to me.  Most of all, I was angry that I was letting my loved ones down.  I was not going to be sick.

Bargaining: Just one more test!!!  I began to bargain with God and the doctors. “Please, God, I cannot be sick right now, my family needs me.”  “Please, doc, check something else.  I’ll take time off from work.  I’ll go to physical therapy, anything, just find out what is wrong.”  “Whatever it takes God, I will do it.  Just keep me going.”  I was still not going to be sick.

Depression: As days in bed and in pain increased, I began to accept that something may be wrong.  That meant my life was going to have to change.  The guilty feeling that I was letting everyone down enveloped me and I retreated to the safety of my house and bed. By this time I was running on my last leg.  I decided that I needed time off from work and the doctors agreed. (I think by this time that they were happy to see a light bulb beginning to flicker on over my head.)  I was failing.  I lost my job due to my illness and almost lost the will to live.  I gave up.  I became a recluse and rarely left the house.  I gave up on living and was just done. This lasted for about three months before my husband told me that he could not live without me and that I had to get up or he was calling the guys in the white coats for me.  Now, you have to understand, Ray NEVER speaks to me like that and it worked.  I listened.   My commitment to my loving husband for over thirty years (and his never wavering belief in me) added to the devoted support of my daughter pulled me up and out of the darkest hole that I have ever seen and never want to see again.  I began to make my way back to the living. It was not going to be easy and it was not going to not happen overnight but I was making my way in the right direction this time.   I needed to find out how to deal with this fibromyalgia thing.  Huh, I may be sick.

Acceptance: Wow, I have fibromyalgia, what a bummer.  I have done my homework, so to speak, but I am still trying to learn the triggers to my bad days and come to terms with actually having to live my life with this stuff.  I don’t plan anything I cannot get out of at a moments notice.  I no longer work.  I am reinventing myself.  I am revisiting my passions such as photography and writing.  I am taking one day at a time.  I still have depression and I am still sad sometimes that this is they way things have turned out but I am dealing with my feelings and my physical needs now.  I may never be the person I was again but I hope that I can be a better person even if I do have fibromyalgia.   For more information you may contact the National Fibromyalgia Association.