Tough Women and Men are Adapting to this AMA Rheumatological Disease
Gail-Elaine Tinker, M.S. Psychotherapist
If there is a topic for which I am expert, it is that of the disease called Fibromyalgia. Let’s begin with the bare facts. Fibromyalgia [fie-broe-miy-al-ja] refers to a condition with a constellation of symptoms that include widespread aching, stiffness, fatigue, and the presence of specific body tender points. The presence of pain in Fibromyalgia originates in the muscles and connective tissues of the body. The exact physiological process behind Fibromyalgia has not been determined, but it is likely many factors, including those beyond the muscles and fibrous tissues, which play a role. Since many patients with joint and ligament pain have been referred to rheumatologists (specialists in arthritis), this medical specialty developed criteria for the diagnosis of this chronic but not progressive illness. The American College of Rheumatologists (ACR) defined Fibromyalgia in 1990. Patients most often have associated fatigue, sleep disorders, irritable bowel syndrome, migraine headaches, immune system or endocrine system disorders and depression. About 2-5% of the general population is considered to have Fibromyalgia.
I have suffered from acute Fibromyalgia since 1990s, perhaps earlier, and I have many friends and clients who also battle this chronic, baffling illness. I am so fortunate to have this informal support system of fellow survivors with whom to compare notes, strategies, side effects, and psychological impacts. I have also found solace with friends who battle lupus, rheumatoid arthritis, and multiple sclerosis, far more debilitating conditions, but these folks understand my challenges. One of the things we have in common is struggling with an ‘invisible’ condition. When we can get our symptoms under control with medication and lifestyle changes we can have periods of near normalcy. These times bring us joy and confusion as we’d love to make this our ‘new normal’ but we have learned over time that such thinking leads to great disappointment. Positive thinking is a wonderful thing in illness, as long as one does not set oneself up for failure. The invisible illness tag marks our public persona. We don’t appear particularly ill to passers-by who see us or distant family/friends who do not understand the pressure that changes our social capacities. I have had many well meaning people suggest the pain was ‘in my head’ and I need only ‘choose’ wellness as a matter of ‘mind over matter.’ I have lost so-called friends and companions over this confusion. I have seen scornful looks from members of the public or felt shame from companions when I was wheelchair bound or scooter dependent for seasons out of real necessity.
Not enough is written about the effects of Fibromyalgia upon the family. Since the disease impacts all areas of the sufferer’s life, it follows that it will change marital, parental, and family relationships. There is an obvious change in power dynamic, as a person becomes in need of more support. This can anger individuals needing and providing the support. Many folks remain unaware of the subtle social contracts they have with their spouses, parents, children, siblings and when disease hits, it impacts these contracts in a big way. If it was a broken limb, diabetes, or cancer, a more ‘visible’ or ‘curable’ condition, folks can measure the time they must put forth into the support of their family members. But when it is a long standing, chronic pain issue, with subtle controls, which takes years of adaptations to master, the lack of ‘time when it will be over’ is frustrating to all involved. It stresses the “in sickness and in health’ vow in most marriages.
What to do about this? I’d like to see the establishment of more formal Fibromyalgia support groups and the encouragement from rheumatologists for the newly diagnosed to enter into short term therapy. There are steps to understanding and acceptance of Fibromyalgia which if approached head-on, can further the balance of the family’s support of the individual. Frankly, coping with the physical symptoms are challenging enough without adding personal and family dynamics to the mix. Any marital, financial, employment or social issue one was struggling with before the diagnosis remains afterward but with the added pressure of new coping with the condition. They say it isn’t what happens to us who determines our destiny, but how we respond to the situation which molds the outcome. –Tinker Psychotherapy has developed a FREE monthly Chronic Pain Support Group which would welcome any pain sufferer, including those with “fibro.”
It would be wonderful if the stigma of therapy for significant changes in one’s life were removed from society. If people considered it strength of character to ask for help from a therapist, clergy, school counselor, or social service, so then much of the isolation and anguish endured by those with Fibromyalgia and their families could be lessened. There is no less of grief experience from change in life due to disease than one due to death, accident, divorce, or moving a long distance. This grief impacts the family as a unit and as well as individuals. Success comes to those who can negotiate this grief, adapt to the changes, and redefine goals together. Sky high is the risk of depression, substance abuse/dependence, divorce, and suicide among those without support.
Another piece of wisdom I can share regards the use of both traditional and alternative medicine in the treatment of Fibromyalgia symptoms. I can report that the most successful stories I have encountered contain and integrated approach, with mental health support. There is a mind/body connection in all disease and pharmaceuticals do not approach this connection as well as chiropractic, acupuncture/pressure, cranial sacral, massage, reiki, yoga, meditation, and the like do. However, I have seen some cases of malpractice in both realms and feel strongly that fibromyalgia sufferers, despite being patients, must learn to become (or hire or appoint) health advocates to protect their interests. Fibromyalgia is a new kind of Oz and it takes serious support to remain upon the Yellow Brick Road. The Emerald City awaits.
I have another theory to add, as controversial as it may be, but I believe stating it may help many. In my life and practice, I see a vast correlation between those who have suffered trauma and then develop Fibromyalgia. The trauma can be as severe as childhood abuse and as ‘routine’ as major surgery. I have debated this theory with many. I also cannot explain for the countless folk who endure such tribulations and do not develop Fibromyalgia symptoms. Perhaps one day a genetic marker or resilience quality will be defined. However, in my experience, those dealing with Fibromyalgia require support all the more as they cope with current events and perhaps issues from their past. I do not believe this correlation makes Fibromyalgia sufferers more prone to psychiatric conditions it just means their need for support is more complex than explained by current medical literature.
Fibromyalgia impacted my life severely beginning in 1990, following traumatic birth of my son, emergency surgery, and post-partum depression, when few recognized Fibromyalgia as a ‘real’ disease. Therefore, doctors did not explain what I could expect clearly. There was a constant expectation that I would one day ‘snap out of it.’ Family and friends urged me to ‘pull myself up by my bootstraps’ and my failure to do so was viewed as a character flaw. My marriage and ability to parent as I had imagined was deeply impacted. After performing my necessary duties, I lacked the energy to play with my son as I wished and he grew up with a tired, headached, stressed mom. Fibromyalgia figured in my divorce when I heard, “You are no longer the woman I married;” this was true; Fibromyalgia had robbed me of my energy and athletic abilities. My mother once accused me using my condition to ‘command attention,’ and this caused me to do much soul searching and therapy. In therapy I mourned the loss of my visions and dreams for myself and dourly wondered what I would become as a result.
The answer is while Fibromyalgia had altered my life, I was able to make adaptations into improvements. I knew I’d no longer be a youth therapist, so I got my Masters so I could work with adults. While I wouldn’t be doing high ropes courses, I could do art therapy. I had trouble punching a shift clock with a hospital, so I developed a more flexible private practice. I was a single Mom, but we relaxed some of our family attitudes to go at my pace and still provide family fun. My son learned compassion and offers to help me with some heavy jobs and warns me when I’m over-doing it. I exercise regularly to keep my body flexible and fit; a task I rarely made time for previously. My family has become accepting of my energy levels and more willing to spread out schedules to accommodate my best efforts. Sure it is embarrassing that my 78 year old mother outruns me sometimes, but we make it a joke rather than a judgment these days. I ask for and accept help with humility and gratitude, rather than trying to be so fiercely independent. I now know that should a potential suitor behave insensitively regarding my illness, perhaps I have not found a suitable partner. From my suffering, I have gained compassion for all who suffer and this has made me a better therapist, citizen, and friend. For me, Fibromyalgia, has been a teacher, perhaps I would have been burning my candle at both ends, rather than learning such wisdom first-hand.
Gail-Elaine Tinker, M.S., RM is a Psychotherapist in private practice in Lehigh Valley, PA. Her general practice of Clinical Psychology includes specialty in trauma, addiction, grief, adult special needs, reiki, and chronic pain…. including a chronic pain support group 2nd Saturdays at 11am. Have you been diagnosed with Fibromyalgia? Would you like to receive individual, group, or online counseling, coaching, or advocacy on this highly impacting condition? Please contact me at tinkerpsychotherapy.com or 610-216-4319 for further information.
Below I have listed a few online Fibromyalgia resources:
- Fibromyalgia Network
www.fmnetnews.com
1.800.853.2929 - National Fibromyalgia Awareness Association
www.fmaware.org - Fibromyalgia Resource
www.fibromyalgiaresources.com
