Living with fibromyalgia is difficult for anyone to live with, but living with it as a man is vastly different. Fibromyalgia is more widely affected by women, so the voice of fibromyalgia for men is slim. Norman from Men With Fibromyalgia is giving that voice to men, and showing us that there is a way of learning to live again with fibromyalgia – man and woman alike.
This post does contain affiliate links which earns commission for me at NO extra costs to you. For more information, please read my disclosure policy.
First I want to take a moment to say Thank You to Being Fibro Mom, for asking us for this post! Also, to learn more about Fibromyalgia you can find the E-Book, “Men With Fibromaylgia – How Fibromyalgia Affects Men Differently” at Amazon.
Now in living with any chronic illness, it is hard to think of another type of illness where those who suffer from it are made to feel guilty and be questioned all the time about being lazy, or a hypochondriac. This is true more so in the male population with Fibromyalgia then it is with women. Why? Men are expected to be the strong ones, not to need to go to the doctor, to be the rock the pillar of the relationships, be it at work, family, or friendships.
No matter if you are male or female, there are people that don’t understand Fibromyalgia and may feel it’s not a “real” disease. For example, let’s compare Fibromyalgia to cancer. We have spent billions of dollars treating and trying to find a cure for cancer. Drugs, surgery, radiation therapy, the list just goes on and on. Each cancer patient is different some respond to radiation therapy, others just basic medication, and some just choose to take a natural approach.
The same is true for Fibromyalgia, and for any chronic illness, short of the research dollars. When I went on my first Fibromyalgia medication, the side effects not only made me feel suicidal but they also drastically reduced my brain function. To the point that my wife said I sounded like a dyslexic drunk. I had family and friends that felt that because the medication did not work I was not truly a sick or as in much pain as I claimed. Medication fixes everything right?
Fortunately my wife stood by me, however other family members and friends told me because the first medication did not work, it was a clear sign that drugs are not the answer, I just needed more exercise and to get a better mental attitude, to build my Faith. .. But I digress.
Going back to the cancer example, when you have a doctor that gives you the best medicine and it doesn’t shrink a tumor immediately or doesn’t get rid of the cancer it’s a pretty clear sign that you were faking it just for attention, right? Now we know that cancer is an often fatal disease, it is serious! So would you turn around and tell a cancer patient who’s in remission, obviously they’ve gotten well, and if they get cancer again it’s really their own fault? Would you turn around and tell that cancer patient if they had a medication that was not working, then obviously they weren’t sick and they shouldn’t try a different treatment?
Of course not!
Men are expected to be the strong ones, not to need to go to the doctor, to be the rock the pillar of the relationships, be it at work, family, or friendships. No matter if you are male or female, there are people that don’t understand Fibromyalgia and may feel it’s not a “real” disease.
But that is the way many of us feel we are treated with a chronic invisible illness such as Fibromyalgia. “You need to eat healthier! You need to exercise more! What did you do to make yourself sick?” These are what men and women with Fibromyalgia hear all too often from well-meaning and or vicious friends and family members. People who fix their own problems and issues without medications, or people who don’t understand, that just because you cannot see an illness, does not mean that you are not sick.
We even listen to ourselves and that small voice that society has ingrained in us, saying that being on medications are bad, or because you’re sick you’re losing time with your family and paying for the medications takes money away from your family. That little small voice that says you can’t afford to be sick, or that it’s your own fault that you’re sick, and the biggest, “Man Up and just quit being a wuss”.
This is not true, so do not listen to those voices. You have an invisible illness called Fibromyalgia, it is real!
Also because Fibromyalgia is known as a “woman’s disease”, it is harder for men not only to seek a diagnosis, but to find a doctor willing to actually work with them, and be honest in treating their Fibromyalgia, much less giving men a diagnosis of Fibromyalgia. There are so many stigmas around Fibromyalgia that it is much like discussing politics or religion, in the medical industry for men.
The good news is this is slowly changing in the medical profession. I do emphasize the slowly though, as they are just now beginning to teach chronic pain and chronic pain management in medical school. Before 2010, chronic pain management was not taught in basic medical school, and even as a rheumatologist or any sub-specialty, it was being taught to treat the pain but don’t look for the cause because it was just in the patient’s head.
We already knew this, and the medical professionals are learning that this is not truly the case.
Just because you have Fibromyalgia, your life is not over, but it will change. I know for myself, when I finally received a diagnosis of Fibromyalgia and started doing research, the voice in my head said, How did I become so weak that I got a woman’s disease? I am a Marine, how did I let this happen to myself?”
In receiving a diagnosis of Fibromyalgia, it was literally like losing a part of me- a death if you will – which means there was also a grieving process. Such a diagnosis comes with the time of denial and isolation; anger, bargaining, depression, and finally acceptance.
For the last one, acceptance, means letting go of who you were, quit looking back and comparing yourself to the “old” you. Yes, that is and always will be a part of you, and a very important part. Use that part of your life for the experiences, but know that comparing who you are now, to whom you were then, is like comparing apples and steaks. There is no comparison!
Now is the time to move forward, learning to live as who you are now, with your new limitations, with new energy levels and physical abilities. You may not be able to do the same activities you used to do. That is okay! It is okay to say yes to life, and still set limitations. It is also okay to sometimes just say no, to give your body and mind a chance to rest, and recuperate.
I am reminded of a quote by Les Brown, the motivational speaker. Let me paraphrase for Fibromyalgia though…
“When Fibromyalgia knocks you down, and it will. Land on your back! If you can look up, you can get up!”
For now, until a cure is found, Fibromyalgia is a lifelong chronic illness. There’s no escaping it this side of the grave. So you have three choices in living and moving forward in life with Fibromyalgia.
- You can sit in the stands and watch your friends and family living life, while you hide away in pain and exhaustion.
- You can get down on the field of life, ignoring the pain and exhaustion as best you can, continue forward enjoying the time with your friends and family, hiding that you are in pain and exhausted. This can make your condition worse by ignoring it, until you have no choice left but to choose #1.
- Find a balance of the first two. Be honest with yourself and others about your condition. That sometimes you will be on the field of life with them, even if you’re not as fast or as good as you once were. Also be honest that there will be times of flares, when even being in the stands hurts way too much, and you just cannot be there.
Any choice is fine. Just know that Fibromyalgia brings pain and exhaustion either way… obviously the third choice is best.
You are not your Fibromyalgia, and it is up to you to become your own best advocate with your medical team, family, friends, and coworkers. You are in control of your life. Fibromyalgia is a closure of some roads, for you perhaps, but there are always detours, and ways to get you where you want to go.
Yes it may be slower, but by the detour you may find that small treasure you missed, or learn something of yourself, or others that you never would have seen before. Perhaps the hobby you loved, is now a way for you to make some income and you start an at home business. Maybe you become the “House Husband” or the “Stay at home Dad” … Spend more quality time instead of quantity time with those you care about.
Fibromyalgia is not the end of life. It is a new, albeit painful, new chapter to begin. However as you find a treatment plan, exercise, rest and meditation techniques, you can find a balance of your new life and once again find enjoyment and reasons to continue on, as well as ways to do so that bring minimal pain.
Norman is the founder of Men With Fibromyalgia, a patient advocate, and a Fibromyalgia, CFS warrior. Lives in Tucson AZ, With his loving Wife Stephanie, their Rescued Beagles Winchester and Luna, as well as their two cats Missy, and Muggins.
Along with Fibromyalgia, he has Chronic Fatigue Syndrome, as well as constant chronic pain from his time with the United States Marine Corps, and 2 Motor-vehicle accidents.
He is a Blogger and Vlogger with SpoonGeeks.com, and when he was going to branch out to tell his own story from a man’s viewpoint of Fibromyalgia, many other men from Facebook groups wanted to do the same. So Norman started Men With Fibromyalgia as a place for men, spouses and family members can share their stories and experiences, with others in the hope of spreading not only awareness of this devastating disease, but in the hope that a cure will be found!
From Norman:
“Born and raised in Northern Canada with the fortune of being a USA Citizen by birth on my Mothers side, I have been able to travel most of North America and have been exposed to many different cultures.
Currently living in Southern Arizona, I have a wonderful wife, to whom I have been married for 6 years. We have been blessed with a spirited Beagle/Shepard named Winchester, a Beagle/Jack Russel named Luna, and our two kittens named Missy and Muggins.
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 was ended in 1997 when I once again joined the Civilian work force. Since then I have done everything from being a Server, Radio DJ, Building Inspector, Traveling Salesman, and Business Development Director.
After being unofficially diagnosed with Fibromyalgia, Adrenal Fatigue, and Osteo Arthritis in 2011, and finally officially Diagnosed with Fibromyalgia and Arthritis in 2014 by the VA, 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 AZ VA Hospital. During my time there as an out patient, 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 AZ, I have been able to maintain a better quality of life than before I saw them.
So, when my health took it’s downturn, my loving wife Stephanie with her best friend and I decided to launch the Spoon Geeks, a blog and video blog about Invisible Illness & Chronic pain. With personal thanks to the Tucson AZ VA for allowing me to share some of the tools they are providing me, we have been able to help many other people with Chronic Pain and illness!
I believe that there is a Cure coming for chronic pain, and diseases like Lupus, Fibromyalgia, etc. In the mean time my goal is to spread awareness about Invisible and Chronic illness to the best of my ability.”
Check out Norman’s E-Book, “Men With Fibromaylgia – How Fibromyalgia Affects Men Differently”
This post does contain affiliate links which earns commission for me at NO extra costs to you. For more information, please read my disclosure policy.
