Melissa Swanson interviews Norman Hanley, founder of “Men With Fibromyalgia.” In Part 1 of this two-part interview, Norman talks about his journey from being a U.S. Marine, an avid camper, hiker and volunteer to being exhausted and in so much pain, he couldn't work, much less hike.
What was your life before fibro?
I was born and raised in Northern Canada with the fortune of being a USA Citizen by birth on my mother’s side; I have been able to travel most of North America and have been exposed to many different cultures. Before I had Fibromyalgia, if it was dangerous, involved severe consequences for mistakes, was a type A+ activity, I was in.
I began my life career in 1996 by joining the United States Marine Corps! Sadly, due to injuries and situations beyond my control, this career ended in 1997 and I once again joined the civilian work force. Since then, I have done everything from being a server, radio DJ, building inspector, to traveling salesman and business development director.
After being unofficially diagnosed with Fibromyalgia, Adrenal Fatigue, and Osteoarthritis in 2011, and finally officially diagnosed by the VA with Fibromyalgia and Arthritis in 2014, I had to find a way to slow down my life. In 2012 after speaking with many fellow Veterans, I joined and became a patient at the Southern Arizona VA Hospital. During my time there as an outpatient, I have seen both good and bad. However, with the chronic pain that came with my health, I have to say because of the VA, and especially the Ironwood Pain Clinic in Tucson, Arizona, I have been able to maintain a better quality of life than before I saw them.
Before Fibromyalgia, I was an avid camper, hiker, volunteer with the Society of Creative Anachronism, traveling tradesman and leading sales person/trainer. I enjoyed many physical activities, from hiking and camping to hockey. Life was wonderful! A new city every week, hotel gyms and pools. Constantly meeting new people…
What were your first symptoms and when did they appear?
In 2010 at the ripe old age of 33, I had been traveling as a salesman coast to coast for seven years when I noticed I could not stay a focused on sales and was tiring more and more easily working 7 days per week, 6 – 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 6 months just totally exhausted all the time. Upon seeing my Naturopath (not being a big believer in western medicine), she tested my adrenals, and at that time diagnosed me with Adrenal Fatigue.
In late 2012, I started a part time “Temp Job” that in January 2013 became a full time salaried position. GREAT! I thought, I am getting back on my feet! Until after having two friends pass, a personal move, and a lot of stress, I was approached by the owner who was not happy with my performance. I was in near constant pain, finding it increasingly difficult to focus, and in August of 2013, I found myself in a quit or be fired position. As I said, I could not concentrate, was in near constant pain, and my emotions were all over the place.
Being an overachiever, a Marine, and in my opinion in great shape, here I am 36 years old and can’t even keep a JOB! What the hell is wrong with me? I took a break and recovered from travel, we got my adrenals under control… Needless to say I was lost, scared and confused. What did I do wrong?
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What was it like being a man and facing a diagnosis of fibromyalgia?
In working with my loving wife Stephanie and her best friend who has Fibromyalgia, they both suggested I ask my medical team about it. My first thought was, “How can I be so weak that I got a woman’s disease?”
But as my doctors were not able to find anything on x-rays, MRIs, or in my blood work, I figured it was worth a shot. I am a veteran, so the VA is my medical team. Because of my chronic pain, I was in their pain clinic and brought up fibromyalgia there. BOY, WHAT A SURPRISE I GOT! In my medical file was a note from my main doctor and the rheumatologist that I “might have Fibromyalgia!” Neither of these Doctors said anything to me about this, but in 2013 my pain doctor did the pressure point test and sure enough, I got Fibromyalgia, moderate to severe at that! (Note, I now believe that like many men, I waited too long to go see a doctor; I wonder if I could have caught it sooner, would it have become so bad?)
Great, I have Fibromyalgia! Now what? My emotions of fear, inadequacy, weakness, loss, and anger led me in a total emotional spiral. I am a United States Marine, how can I not be able just to plow through this and get well? I was afraid of being alone, being forgotten, being unloved and unwanted, afraid that my wife would leave me, that I would not be able to provide or do anything.
Work? That is almost funny. I was losing one job after the other, even did some temp jobs that let me go, because I can’t seem to work, or maintain focus enough to complete even the simplest of tasks! My endurance was at best 4 hours of work per day with a two to four-hour nap right afterwards because I was just so exhausted!
So, now in 2017, what is it like to be a man with Fibromyalgia? Well, I believe many of the physical or clean pain (physical symptoms and pain) are the same, to varying degrees. However, the dirty pain, which is the emotional and mental pain, can indeed be and I believe is worse on men. Why? Because we live in a society, even with equality, that still teaches by example that men are to be the leaders and suppliers of their homes. To be constantly on the go, to be the active dad, husband … the rock and pillar of his family. When a man feels he cannot achieve this high standard himself, he becomes the weak one of the pack and therefore easy prey for others.
Were you believed?
By some, yes. But I am constantly asked by people and friends, “Isn't Fibromyalgia a woman’s disease?”
Three different doctors have told me either that it is a woman’s disease, that Fibromyalgia is all in your head, you're too young to have these issues, or there is no such thing as Fibromyalgia.
When I first got my diagnosis, I joined some Facebook Fibromyalgia support groups. One woman in a group where I was seeking answers and support said, “Quit stealing our disease; why do you men always have to take?” Yes, that is the direct quote. Fortunately, others in the group were more caring and helped put me in contact with other men who had Fibromyalgia.
How did it initially change your life?
This was a very low time in my life, and I had many theories as to what was wrong with me. I just knew that a doctor could give me a pill and I would be fine. But until then, how can anyone respect what I have become? I was in pain night and day, exhausted all of the time, and an emotional wreck with not enough energy to do anything. Who could like – much less love – anyone like that? I saw my friends start pulling away, less calls to go “hang out” and my life falling to pieces around me.
The pain I have never seems to go away. Day and night, from a throbbing dull ache to a sharp stabbing pain that seems to move around my body completely at random. As for the exhaustion, I would be chugging along fine, and all of a sudden I felt like my brain literally just switched off… What am I doing? What was I doing… Even with the task right in front of me. What is WRONG WITH ME???
Sometimes when the pain was just too much, I would lash out in anger towards my friends and my wife, my frustration in not being able to handle and finish a simple daily task like cook a meal, completely infuriated me! This is not me. What happened? And when did it happen?
I used to have friends, but now, so many assume that I am “sick,” so many never call anymore. I felt so alone, and yet at the same time I did not want anyone around me, as “hanging with friends” takes so much energy that I do not have. Fortunately, I have found who my TRUE friends are, who still call or come over as they know I can’t get out.
What is your life like now?
By taking my daily pain medications (opioids, muscle relaxers, anti-inflammatories, anti-depressants, etc.), I can live a semi functional life versus a couch-bound, tear-filled life. I have also found healthier eating, such as an anti-inflammatory diet, to be helpful.
Along with medications and diet, light yoga and focusing on basic movement such as walking for 15 minutes a day has helped. So now I am a house husband who does 75% of the house chores in a good week, 50% in a bad week. When out shopping, I am moving slow with my cane and sometimes even have to use it around the house, but I am still moving.
Watch for Part 2 of Melissa's interview with Norman and learn about
what has surprised him, his biggest challenges and his advocacy work.
Melissa Swanson is a chronic pain patient, advocate, and author of Ravyn’s Doll: How to Explain Fibromyalgia to Your Child. Through her Facebook page, she offers positive encouragement, medical information, resources, and support to 16,000+ fibromyalgia and chronic pain patients. In addition to her own blog, Melissa has been published in "Living Well with Fibromyalgia" and the NFMCPA "Advocate Voice." She's a graduate of the 2014 Class of Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association and a member of the Leaders Against Pain Action Network.
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