By John Ferman, Guest Columnist
We were married for 41 years. You’d think after all of that time you would know everything there was to know about a person.
I knew Carol as a loving wife who would do anything she could for the kids and the family. She was a social worker and very concerned about the comfort of others. She didn’t complain and didn’t want others to worry about her.
Carol’s symptoms started shortly after we were married in 1967. Carol was very energetic, had just graduated with a master’s degree in guidance and counseling, and was anxious to start her new career. She also was somewhat of a “perfectionist” who wanted to keep the house clean and organized, but started to develop some pains as a result.
I remember attending Lamaze classes in 1969, when she was pregnant with our first daughter. The instructor commented on how “flexible” Carol seemed to be during the exercises. Our first daughter Deborah was 4 weeks premature and the second daughter Deanna was 7 weeks premature. We joked that if she got pregnant again we would have to carry around a basket to be ready for the next one.
Carol’s joint pain got more severe in the 1980’s. She was the first director of a new crisis hotline in the Cleveland, Ohio area and was working unusually long hours. With all of the mental and physical stresses she was going to a chiropractor monthly and then weekly. She was also getting massages on a regular basis.
Initially, Carol’s neck, back and shoulders were the major issues. The doctors did not seem to understand her pain and could only recommend ointments and pain medication. It did not seem to help. She was diagnosed with Thoracic Outlet Syndrome, TMJ and maybe fibromyalgia, but they were not sure.
I was taking over the household tasks of cleaning, doing the dishes and the laundry. Some family members commented that they thought Carol “looked perfectly okay” but was weak, lazy and taking advantage of my help. I knew there was a problem with her pain but I did not know what it was or what else to do to help.
In addition, Carol had severe allergies, IBS symptoms and an extremely sensitive stomach, so she avoided certain foods, spices, and medications. Her allergies often limited where we went for social activities and even restricted purchasing certain items if they had chemical smells, dust, or cigarette odors.
She had flat feet and was prescribed orthotics. Her feet always hurt and finding comfortable shoes was challenging. She had very sensitive hearing and was a very light sleeper. The slightest noise would wake her. Pain and disturbed sleep meant she always woke up exhausted!
Carol would describe affected parts of her body as shifted, twisted, crooked, and her favorite word "discombobulated" (meaning everything was zig-zag and out-of-whack). Her pain was achy and throbbing, and she also had episodes of radiating pain, stabbing, pinched nerves and numbness. She would say things like, "I will hurt myself if I reach or stretch for that item, or if I bend that way or if I twist my body."
She had a lot of extra pain if she tried to carry something that was awkward or too heavy. My daughters could carry heavier items than my wife, and the kids and I did a lot of the fetching, carrying and cleaning for her. I made most of the meals and got the kids off to school.
As a result of her non-restorative sleep and pain, Carol was often in bed until the kids got off the bus from school. The girls would run upstairs to the bedroom, eager to spend some quality time with mom, as she was getting out of bed in the middle of the day. The girls remember it as a special time. Moments like these with her girls gave her some comfort and support, but the girls were sometimes embarrassed. They could not tell anyone that their mother was in bed all day.
Carol’s muscles were always tight, and she often described her pain as if "one part of her body was pulling at another.” The only exercise she could tolerate was very slow walking. She loved walking at sunset in the park.
She had pain driving a car and searched extensively to find the most comfortable car so she could remain independent. It was very stressful for her to be a passenger in a car. She would try to brace herself for the starts, stops, bumps, and turns. If I was driving, she would request alternate routes for straighter roads. We would sometimes go 3 or 4 miles out of our way to find a smooth straight road for her to travel on.
We didn’t know at the time that these were telltale symptoms of Ehlers-Danlos Syndrome (EDS).
Carol was very discouraged that the doctors did not believe her and she stopped telling them about her pain because the tests came back “normal” and there was no treatment or even a reason for her pain. They just told her she was overly-sensitive, exaggerating, or “it’s all in your head.”
It really bothered her that her medical records said all those bad things about her "mental state.” She tried at times, in vain, to get the records changed. She knew that when she was depressed, it was due to fatigue, lack of sleep and pain. Not because she was making up things to be sad about.
She could only sustain working for a few more years part time, and then it got to be too much for her physically.
We continued to play out that very difficult lifestyle until Carol was diagnosed with breast cancer in 2002. The continuing pains, surgeries and chemotherapy took their toll on her and she had a major struggle with clinical depression. She was on so many medications that they masked many of the symptoms.
Carol passed away in 2008 of breast cancer as a result of some prescribed medication, the same year my daughter Deanna was diagnosed with EDS. In her early 20’s, Deanna developed many of the same symptoms and pain as her mom. They often talked about the similarities and offered each other comfort and understanding.
EDS is a genetic defect in collagen protein -- the “glue” that supports and holds the body together. It causes chronic pain, joint hyper-mobility (double-jointedness and fragile joints) and affects multiple other body systems. There is no fix -- no medicine or surgery -- that resolves this condition. However, it is important that EDS be diagnosed and managed, so that symptoms can be controlled and appropriate preventive measures can be taken.
If only someone had told Carol about EDS. It would have saved both mother and daughter much suffering, loneliness and judgment. I don't have room in this article for all the details about how undiagnosed EDS harmed my wife and daughter's lives. Just believe me when I say emphatically that if they had known about EDS, their lives would have been dramatically different!
Ehlers-Danlos Syndrome is not rare. It is rarely diagnosed. It is estimated that EDS affects more than 1 in 5,000 people worldwide, but only 5% are correctly diagnosed with one of the 6 major forms of EDS. In the United States alone, 650,000 sufferers go undiagnosed every year due to physician mistakes or lack of knowledge about the condition.
Many afflicted with EDS - and the people who care for them – don’t know where to turn for information, advice and help with issues such as treatments, therapies, practitioners and products to assist in managing the symptoms. The majority of those who are undiagnosed do not know this disorder exists and are left on their own, struggling to find a reason and a name for the pain and suffering they are experiencing. They suffer for many years and die – never knowing why they had the pain.
Tell someone about EDS today and every day. I do! You could improve a life or even save one!
John Ferman and his daughter Deanna Hamm are co–founders of EDS Awareness, a non-profit online resource for the Ehlers Danlos Syndrome community. John is a full time volunteer managing the program. Deanna is a pre-med graduate with Hypermobile EDS. She leads the Cleveland Ohio EDS Support Group.
Pain News Network invites other readers to share their stories with us. Send them to: editor@PainNewsNetwork.org.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.