Why I Became a Fibromyalgia Advocate

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ProHealth is happy to welcome Melissa Swanson to our team of writers. In addition to being a busy mother, an author and a Fibromyalgia patient herself, Melissa is an advocate for others suffering with the chronic pain of FM.

My friend Celeste once said, “I would like to see you write a blog about why you wanted to be an advocate.” I didn’t wake up one day saying, “I think I would like to be an advocate.” It was definitely not on my “When I grow up I want to be…” list either.

I did a lot of thinking about her question.

As I was growing up, I watched my parents help others. I didn’t appreciate what they were doing and quite honestly, I didn’t like it most of the time. I felt like others were getting the attention that should have been mine. It didn’t keep me from learning from their acts of kindness, though. I think I started to model their behavior as young as 11 years old. I became friends with a girl who would become one of my very best friends because she had crutches and I offered to help her carry her books. We have been friends ever since. I also babysat for some families where I spent more time taking care of the kids and cleaning the house than the parents did. In high school, I worked in a nursing home, where I adopted a few wonderful grandmas and grandpas. I still have a letter from a daughter of one of the residents I visited often on my days off.

During college, I worked as a teacher at a state-run preschool/day care center. The children’s stories still make me cry. I was too young, cared too much, and could not handle the fact that there was nothing I could do to help them escape their after school lives. Also, for five years during and after college I worked as a paraprofessional office staff at an Elementary School and at a YMCA before and after school and summer program. It had been almost 20 years after moving away, when I had one of “my kids” contact me through Facebook. Now, five years later, one of them who was nine when I left still texts me monthly, and we go out for coffee when I am back home. I have become his big sister. While working at the YMCA, I was given the B.O.B. award that is issued to those employees who go above and beyond the required job duties. I still feel I was just doing my job.

After moving away, I took a part-time summer job. I was only going to work one summer, but I worked there for over 20 years. It wasn’t what I went to school for; it was less money and the work load and stress grew year by year. Why did I stay? I loved the people. My co-workers and customers became family. I was considered their “work mom or wife.” They needed to be taken care of and I needed to take care of them.

In the past 15 years of my life, I have been the room mom, school volunteer, Girl Scout leader, and volleyball team mom. I loved each role and was saddened when each of them ended. Over the past five years, I have started a blog, Facebook fibromyalgia page, and written articles published in several magazines. In October 2014, I was asked to join the National Fibromyalgia and Chronic Pain Association to be trained as one of their Leaders Against Pain. Quite honestly, I did all of those things not because they were the right thing to do but because of how they made me feel afterwards.

I began a new job in September, working with children who speak English as a second language. I told my supervisor that I was hired as a paraprofessional but my real job was to be an advocate for them and their families. These families need more than help during school, they need clothes, food and in some cases, a home. I haven’t helped these children outside of school because I was required to, but because I couldn’t see them in such need without doing something. I wouldn’t forgive myself for not offering whatever support I could.

Here it was – the “AHA!” moment. I finally had my answer for Celeste.

Why did I decide to become an advocate?

I didn’t. I really feel I had no choice. I see others struggle going down the same fibromyalgia journey; if I can offer at least one piece of advice that helps them, a motivational quote to keep them going, or a silly cartoon to take away their tears and replace them with a smile, then I have done what I was meant to do.

I used to wish every day that fibromyalgia with its comorbid and co-existing diseases would go away. Please don’t get the wrong idea. Fibromyalgia is awful and for some of us the co-existing diseases are worse than the pain of fibromyalgia. Yes, it will be wonderful when they find a cure. However, whether you believe in this or not, I believe that there is a reason that I acquired fibromyalgia. Some would say “a divine intervention.”

I say it is who I am on the inside, the values and the work ethic that I was taught by my parents and my life experiences that makes me a Fibro Warrior – Living Life.

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Melissa Swanson is a chronic pain patient, advocate, and author. Through her Facebook page, she offers positive encouragement, medical information, resources, and support to 10,000+ 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 is a graduate of the 2014 Class of Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association and is a member of the Leaders Against Pain Action Network.

You can find Melissa at:
Facebook: www.facebook.com/survivingfibro
Blog: www.survivingwithfibro.wordpress.com
Twitter: MelissaSwanso22

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2 thoughts on “Why I Became a Fibromyalgia Advocate”

  1. Bradley83 says:

    I have had this for years over last cupole off years know all l take is amtriptyin now codoallmore for pain hve not seen a consotain its been really bad this month been to the doctors just say this is all they can do l work then when go home l am to tired just can not do any more

  2. Bjcwskar15 says:

    How do you do all these things with fibromyalgia? Most people with fms would love to “help” and “give” but they ache too badly and are in way too much pain……I’m not sure if folks claiming to have fms and advertising all the things they are active in is really helping our cause! The lady that wrote the book! “unbroken” has cfs and then refused to explain HOW she had the energy to do it….people were asking her….not to be rude…but to know her secret…most people with cfs (even if they had the writing talent) do not have the energy! I will sleep a few hours just from using my energy to respond to this!

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