According to National Fibromyalgia Partnership Incorporated, an estimated 750,000 boys and young men will have fibromyalgia. This means that men with fibromyalgia do exist and the condition is not, as many have suspected, a “woman’s disease”.
Men with fibromyalgia wage a silent battle, not only with the outside world, which has difficulty taking them seriously but with themselves for not being the “man” society expects them to be.
In this three-part interview, I sit down with Norman Hanley, founder of MenWithFibromyalgia.com as he discusses the gritty details of what life is really like for a man living with this condition.
This isn’t just Norman’s story, this is what men with fibromyalgia want you to know.
Norman realized there was something different about his health compared to that of others his age when he was just 33 years old. By 2010, he had already been traveling as a salesman from coast to coast for seven years.
“I noticed I could not stay a focused on sales and was tiring more and more easily working 7 days per week, 6- to 14-hour days. So I decided to get off the road and work less, but just in my local area. This was a mistake, and I ended up on my couch for six months just totally exhausted all the time. Upon seeing my naturopathic physician (not being a big believer in Western medicine), she tested my adrenals, and at that time diagnosed me with adrenal fatigue,” explains Norman.
Things started looking up for Norman when he began a part-time temporary job that turned into a full-time, salaried position in January of 2013. He believed this was the start of his road to recovery.
Unfortunately, due to two of his friends passing away, a personal move, and being under a near-constant amount of stress, he was unable to keep up with his duties and the owner of the company began to take notice.
At this time, Norman was in near-constant pain, was experiencing emotional difficulties, and was finding it harder and harder to focus. In August of 2013, with the threat of termination looming over his head, Norman chose to leave the position.
Norman couldn’t, for the life him, figure out how a 36-year-old overachieving Marine in great shape could not hold down a job. He decided to take a break and recover from traveling. This resulted in his adrenals coming back into balance. Still, the strange health problems he’d been plagued with over the past three years were beginning to take a toll on his psychological health.
“What did I do wrong?” Norman wondered.
The Long, Hard Road to a Proper Diagnosis
After the diagnosis of adrenal fatigue, Norman went to the VA for medical treatment. He’d not gone previously because he believed that the services were there for combat veterans only, but he was wrong. The VA is for ALL who served their country.
This is where he started on the roller coaster ride of doctors, the very first of which set a negative tone for his journey by completely dismissing him.
The doctor told him that he was too young to be in so much pain and that chronic fatigue syndrome and adrenal fatigue were just doctor’s labels for lazy people.
This type of reaction from the medical community is very common for patients living with chronic pain. It can sometimes take years just to find a doctor who takes you seriously and wants to do the tests necessary to confirm your illness.
It is my opinion that this is the most difficult part of the journey. It seems everyone is looking at you like you’ve turned into a gibberish-speaking alien right before their eyes. It’s one of the scariest and most isolating feelings in the world.
Understandably, the callous words of the doctor crushed him. Norman had experience in healthcare as he had been an EMT and had done plenty of research on his own health. Even so, there was a part of him that wanted to believe this was true, that he could just Marine up, pull on his boots and get well again. The other part knew better and fought with the VA for a second opinion.
The second doctor saw Norman only twice before he left his practice, but beforehand, he at least had the foresight to send his patient to a rheumatologist to have him tested for rheumatoid arthritis and possibly fibromyalgia.
“But that’s mostly a woman’s disease,” the doctor added, on Norman’s way out.
Norman was given Tramadol for the constant pain, which is a low dose of morphine. After a series of MRIs, X-rays, tests, etc., the rheumatologist said he had osteoarthritis from service injuries and might have fibromyalgia. However, she thought it was for his primary physician to diagnose.
So, on the second of two visits to the doctor who would leave, Norman was told that yes, it looked as though he had fibromyalgia, but that it was up to his rheumatologist to diagnose. (Really?)
Thankfully, the doctor did send him to a pain management clinic to see if they could at least get Norman’s pain under control.
It wasn’t until early 2014 that the pain management clinic got Norman in to see one of their doctors. He explained his experience, she read all the reports and said, “Yes, you have fibromyalgia, and they should have been treating you for it a year ago!” (No kidding.)
“But That Is a WOMAN’S Disease”
This statement is something Norman has heard from other men, women with the condition, and even doctors. He remembers one woman with fibromyalgia saying, “Men are just stealing our disease.” (What?)
To add insult to injury, men with fibromyalgia are often accused of being weak, lazy, mentally ill, addicted to drugs, or just pretending to have an illness. They are also frequently told that condition is “all in their head.”
“However, in talking with other men who have fibromyalgia, and I know from my own viewpoint, the greatest enemy we have is ourselves.”
Feeling inadequate, weak, unable to provide for their families, hold a job, keep active, and “be a man”, takes a huge toll on the psychological health of a man with fibromyalgia. Men, unlike women with the condition, will often avoid these feelings and push themselves until they can go no further.
According to statistics released by the CDC in 2014, one out of eight people with fibromyalgia is men. Norman doesn’t agree with this assessment, however. He believes the number could be much higher, but that many men will not seek treatment unless they have no other options.