Melissa Swanson continues her interview with Norman Hanley, founder of “Men With Fibromyalgia.” In Part 2 of this two-part interview, Norman talks about what has surprised him, his biggest challenges and his advocacy work.
What are your biggest battles now and how do you confront them?
I would have to say that depression and frustration are my two biggest battles.
Every day can bring new challenges and new “Limits” to what my body and/or brain can handle. This may sound drastic, yet it is the truth. I try hard not to “Look Back” at the old me to compare, because when I do, I get into a deep depression spiral.
I have heard many chronic illness patients say, “I am depressed because I am in pain, I am not in pain because I am depressed.” Quite a statement, however, anyone with a chronic issue knows that pain and depression very easily go hand in hand, and that if we are not constantly on our guard against it, then the depression can sneak up on us and overwhelm us before we even are aware of it.
Fibromyalgia is not progressive; however, comorbid conditions are amplified by Fibromyalgia. There are days when use of my right arm is so limited and weak that I can barely lift a coffee cup or raise my hand to my mouth to take my pills.
It is so frustrating to start a simple construction project or home repair that I know how to do but then be hit with a total brain fog. I have to look up information I used to know by heart.
It is so frustrating to try to complete a task, only to hit the proverbial “Wall” of no energy and have to leave that task unfinished. To HAVE to ask for help, on something as simple as feeding our dogs or lifting something as light as 25 pounds!
What has surprised you most about having the illness?
At first it was how do I have a woman’s disease? However, the more I read and studied Fibromyalgia, I found that more people have Fibromyalgia than Cancer, so why is there not more awareness? I was fortunate to find a Dacebook Men’s group, who supported other men with Fibromyalgia; I was surprised at how few men I talked with were actually diagnosed, but yet had all the signs and symptoms of Fibromyalgia.
So what surprises me the most about having Fibromyalgia is truly three-fold.
Many medical professionals do not believe Fibromyalgia is real, even with documented proof!
After many years of medical teams diagnosing Fibromyalgia, we still do not know what causes Fibromyalgia! Without knowing the cause, how can we expect to be properly treated, much less cured?
The lack of awareness, along with limited fact-based studies and solid information about Fibromyalgia, means there is limited awareness about the disease.
What is the best/worst thing that has happened due to illness?
The best thing? I feel like the biblical Job. I have been given this illness, this challenge, and yet there are positives! I am now working with people (Melissa Swanson, Julie Ryan, Christine Miserandino, and others) who in the beginning of my illness were my blogging heroes! I have found an outlet to express not only my pain (my personal pain journal on Facebook), but also my accomplishments through the pain, and I am able to encourage others to do the same.
The MenWithFibromyalgia.com project is a huge part of why I get up and do my best each and every day – even if it is to just get dressed.
The worst thing? Well, I can’t work, hike, camp, or do a lot of the things I used to do. I have to find new things, new projects to give me the same benefit, the same sense of joy, the same contentment – new experiences that match my old and current values. Sometimes this can be a very difficult search as, well what was the “VALUE” to me in camping or hiking? As I can’t do that now, how can I achieve the same value in a different activity that I can do?
How did you get involved in advocacy?
Now, that was a total and complete GOD thing. I started Men with Fibromyalgia as a personal pain journal, as I decided to apply for Social Security Disability Insurance. However, in telling my Fibromyalgia story, many other men who read it asked me if I could help them tell their story. Hence, within 48 hours of me publishing my story to a Facebook group …. MenWithFibromyalgia.com was born.
From there, we were asked by Greg Jones of “Being Fibro Men” on Facebook, (Now merged with Facebook.com/MenWithFibromyalgia) to take over his FB page and group as his health was deteriorating. So in less than three years, we are at 8,500 members and 7,900 followers on Facebook.
All I did was be willing to share my story and help others. Now I am helping build an international nonprofit focused on bringing awareness and research to the Fibromyalgia community, as well as being known as Mr. Fibro!
You are an inspiration to so many; what advice do you give to others?
Wow, I never thought I would be an inspiration to others. As I said above, I shared my story. God did the rest!
With that said, the best advice I can give to anyone is this:
This is not easy advice as you will need to LEARN how to talk with your medical team and not just talk but actually communicate to make sure that they know the issues you are dealing with!
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What is next for Men with Fibromyalgia?
Well, only God truly knows what in in store for us. I will say that as of April 5, 2017, we have our first, second, and third INTERNATIONAL Men With Fibromyalgia Advocates. We now cover Israel, the UK, Canada, and soon Australia.
We are also partnered with the newest Fibromyalgia nonprofit, the International Support Fibromyalgia Network – #SupportFibro on Facebook. As their Men’s & Veteran’s Program Director & a founding advocate on their board of directors, it is our hope and goal to bring not only fibromyalgia awareness to our followers and supporters, but to bring research, better treatment options, and government funding, into the Fibromyalgia community for men, women, and teens. We’re also working with the Veteran’s Administrative Healthcare System, training their medical teams in the latest fibromyalgia research and helping Veterans find alternative treatments if needed that are not covered by the VA.
Another partnership we are looking forward to growing is with the well-respected Chronic Illness Bloggers, a group of likeminded bloggers working together to raise awareness for all Chronic Illness!
So what is next for Men With Fibromyalgia? More international partnerships, research, awareness, and unity within not just the Fibromyalgia community, but the chronic pain and illness communities as well!
In our current timeline, we will be opening our Zazzle store for Men With Fibromyalgia merchandise and… Mr. Fibro “MAY” be seen at upcoming Comic-Cons or not.
Well … … 😉
The pre-release version of “Men With Fibromyalgia – How Fibromyalgia Affects Men Differently” will be officially published and released in print and e-book format in summer 2017.
We are looking forward to attending various medical talks and summits on fibromyalgia, as well as having tables at various awareness and health events. We will be continuing our monthly Live Q&A events on Facebook on the 2nd Tuesday of each month at 10:00 am Arizona time with different fibromyalgia and chronic illness advocates and medical professionals. Also in our Live Q&A Video series line-up is “Chronic Couples” hosted by my wife Stephanie and me talking about couples where one or both have a chronic illness, how to better communicate, help one another, talk to family members, coworkers and friends. When? Every 1st and 3rd Wednesday at 5:30pm Arizona time.
Norman Hanley is the Founder of Men With Fibromyalgia and Co-Founding Advocate and Program Director for the International Support Fibromyalgia Network. Norman is a loving house husband, Puppy Dad & Foster, Author, Actor, and Fibromyalgia patient. He lives in Tucson, Arizona, with his wife Stephanie, puppies, kittens, and foster critters.
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.
You can find Melissa at: