When you see Barb, Marsha and Kim together they look like any normal all American sisters. They are always laughing at inside family jokes, finishing each others thoughts and sentences, telling stories about personality quirks and habits that make them and everyone around them smile.
They banter back and forth just like sisters often do. And no matter what is said you can feel the love and strength they share with each other.
What you would never know is that what bonds them is not only the strength of the blood connection and a strong sense of family as part of the core values instilled in them since birth, but it also comes from a strength they found with each other by sharing a common illness.
All three have been diagnosed for more than 8 years with Fibromyalgia and Chronic Fatigue Syndrome.
Theirs is an unusual story of how three sisters found the path to controlling the diseases that have been controlling them for years. It is a story of circumstance and determination and love.
First meet Barb. Barb is the third oldest of seven siblings born and raised in Cleveland, OH. Strong willed and goal oriented, she views having FM and CFIDS as a battle she is determined to win. First diagnosed 10 years ago, she put all the energy she could muster into making ends meet.
As a single mother of two, she worked in construction, a job that met her goal for providing for her family, but that took its toll on her physically. She would work all week and then sleep all weekend, replenishing her energy levels so she could make it through another week on the job.
Too headstrong to admit she couldn't do it all, Barb learned how to prioritize her energy…which meant giving up anything that wasn't directly linked to the welfare of her family.
Her path for answers to her health issues were pretty much a dead end for years, so she just plugged away, hoping eventually something would come along that could help her regain her energy and stop the pain. In July 2004, while visiting her mother, Barb spotted a brochure that came in the mail advertising the newly opened Fibromyalgia & Fatigue Center of Cleveland.
She looked it over, and as a woman of decisive action, immediately made her first appointment. She knew that if this helped and she could manage the pain and fatigue that had been her constant companion for 10 years her future would be brighter than her past.
After her first initial appointments Barb knew she found the answer. She called her sister Marsha, the oldest of the siblings, and told her she had to make an appointment and go to the FFC in Cleveland. Not one to argue with, Barb made it clear she wouldn't take no for an answer from Marsha who was diagnosed with FM/CFIDS just one year after Barb and together they have been sharing their struggle as sisters and as friends.
Marsha is married and with adult children now, but when her FM/CFIDS was first diagnosed 9 years ago, her teenage children were robbed of the mom they once knew. One day of activity would mean the next day in bed. One meeting or sporting event or even some simple housework would mean hours of pain and sleepless nights.
Until she was diagnosed she never knew what was going on, and even then other than a prescription to mask the symptoms, her doctor couldn't offer much hope for relief from the chronic exhaustion or the pain. For years her family practitioner has pretty much ignored her illness as part of her medial health history.
On a recent visit to the doctor for something minor she overheard her doctor dictating the notes after her visit and was stunned to find out her chart was to be noted "normal healthy female". She hadn't felt "normal" or "healthy" in years.
When Barb told Marsha about her experiences at the FFC in Cleveland, Marsha made her appointment and in just a few short months was feeling "20 years younger". Looking and feeling like she doesn't have an ache or a pain in her body, Marsha said one of the most positive things that came out of her going to the FFC was not only her improved health, but her husband, who accompanied her on her initial visits, gained a new found understanding of the disease that robbed his wife of her energy for all these years.
Not ones to keep a good thing a secret, Barb and Marsha convinced their third and more conservative sister Kim to also seek help at the Fibromyalgia & Fatigue Center. Kim was diagnosed one year after Marsha with FM/CFIDS. Her eight year struggle began when she relocated to Hawaii with her husband.
George Burns once said "Happiness is having a large, loving, caring, close-knit family in another city." For Kim nothing could be further from the truth. Most people expect moving to a tropical paradise would improve your health, but it was the beginning of what Kim thought would be the end of "feeling great days". With the stress of living in a new culture without a solid support system and major shifts in lifestyle, Kim began to experience the symptoms now so common to her siblings.
She moved back to Cleveland two years ago so the comfort and strength of family and friends would be there to help her as she struggled to make a life for herself as a single woman. Now a patient at FFC in Cleveland, Kim is feeling good about the future.
She has improved energy levels so can enjoy being Aunt Kim, and actively participating in family gatherings. She was even up physically and emotionally to a trip back to Hawaii to visit friends this past fall.
Now when the sisters gather, which is frequently, they don't talk about their illness, they talk about their wellness. They compare treatments, share information, and now they feel so good about how they are feeling they have the time and energy to worry about how their other family members are feeling. They have gotten their mom into the FFC as a patient when they recognized symptoms of their own diseases in her.
Since their earliest memories of FM/CFIDS go back to 1973 when their aunt began experiencing the pain of FM, they now worry that it is a family illness. The sisters all agree that they see signs of it in at least two of their remaining four siblings and they worry that stress may trigger it in the others. They also see their own children, nieces and nephews showing early signs of fatigue or viral infections that won't clear up that make them afraid this may not end with their generation.
They are ever watchful because they know if they can get those they love the help they have found, years of pain and exhaustion can be avoided and quality of life will not suffer.
More and more frequently a patient with FM/CFIDS has a relative with the same condition. Why this occurs in families is still somewhat of a mystery, but preliminary studies show that this can be a case of both genetics and environment working together to put families at risk.
It has been said:
"In truth a family is what you make it. It is made strong, not by number of heads counted at the dinner table, but by the rituals you help family members create, by the memories you share, by the commitment of time, caring, and love you show one another, and by the hopes for the future you have as individuals and as a unit."
(Kennedy, Marge and King, Janet - 1994)
For Barb, Marsha and Kim family is all that and more. The time, caring and love they show each other and the rest of their family is evident in their common hopes for good health for all, and their determination to keep the common bond of FM/CFIDS under control for generations to come.
For more information information on the Fibromyalgia & Fatigue Centers, Inc in Cleveland, visit www.fibroandfatigue.com or call 440-260-9700.
Reprinted with permission of The Cleveland Women's Journal