Melissa Swanson Interview: An Advocate’s Journey Cont’d

Advocate - Melissa Swanson

In part one of my interview, Melissa Swanson: A Rite of Passage with Fibromyalgia, we learned how Fibro Warriors ~ Living Life came to be.  Now we will explore how she became a leader, an advocate, a writer, a certified fibromyalgia coach, and author. 

Celeste: What have you done to promote awareness of fibromyalgia? 

Melissa: I am a co-leader of an in-person fibromyalgia support group and an online support group, Fibro Warriors Facebook page. Our group now has over 18,000+ likes.

I began writing for FibroModem's emag, Living Well with Fibromyalgia, March 2013.

In 2014, I attended the Leader Against Pain Action Network training program in Salt Lake City, sponsored by the National Fibromyalgia & Chronic Pain Association (NFMCPA) and began volunteering as an advocate.

In the past two years, I secured a proclamation from Wisconsin Governor, Scott Walker, declaring May 12th National Fibromyalgia Awareness Day. I wrote for the NFMCPA's newsletter Advocate Voice and worked as a volunteer at the TAP conference sponsored by the NFMCPA in Washington, D.C. And, I helped host NFMCPA’s first annual Together Walk. 

In June 2015, I was hired as a contributing writer at ProHealth.com.

Last summer, my daughter and I traveled to Boston so I could Interview former New England Patriots NFL player, Dominique Easley and his 16 year old sister, Destinee, who has fibromyalgia. We attended the kids training camp orchestrated by Easley and several of his teammates to raise funds for fibromyalgia research. Finding balance between work and play, my daughter and I went whale watching, toured Salem, and waded in the ocean. As daughter and mother, we learned and shared together because of this unique experience.

Celeste: How have you expanded your support role?

Melissa: I love to teach others how to help themselves, so I attended the International Fibromyalgia Coaching Institute and became a Certified Fibromyalgia Advisor. I wrote about my experience in a ProHealth article, Everyone needs a Coach in their corner.

Celeste: What can others do to help support and encourage their friends and family?

Melissa: This is a message to friends and families. If you know someone who has a chronic pain illness, don't assume the person feels good because they don't look bad. Fibromyalgia, and some of its sidekicks, is invisible. When you ask how your friend feels, validate what they tell you; otherwise, she/he may feel you have become desensitized to what we experience. What we need to hear is that you believe us.

Don't give up on us! Just because we have turned down your last 5 invitations, it doesn't mean we don't want to spend time with you. For instance, I have one non-fibromite friend who has learned I can't go to coffee at 9 a.m. She knows I probably won't say yes to a long day of shopping. Instead, we may meet at 10:00 for coffee or we arrange to sit in the sun and chat.

A great way to support your chronic pain friend or family member is to share your life struggles or concerns, and be willing to share what you need for support too. When you do this, we feel needed and you understand why it is important to have mutual support, such as listening when we tell you about fibromyalgia and advances that are important to us. It is mutual sharing and caring that helps a good relationship become great.

Remember, asking small favors such as, can you turn off the light downstairs, drop off a book, or cook a favorite meal can be stressful depending on the circumstances surrounding the moment. The hallmark of fibromyalgia is its unpredictability. One day, one hour, we may be perfectly able to do an errand, but in the next moment, we are not. And, please don’t ask why, because we don’t know the answer. We are not faking it, and when we feel you don’t remember our character is the same, it chips away at our independence.

Lastly, don't be surprised if you text your friend and she/he does’t need any help. We still have good days, even great days, depending on how we are coping in the moment. What’s important is that you took the time to ask and make the offer.

Celeste: What is in your future?

Melissa: My first children's book is to be published this summer.

Celeste: Here is a brief introduction to Ravyn's Doll: How to explain fibromyalgia to your child. 

All the kids in class made paper dolls to show how someone they love is hurt or is sick. When it's Ravyn's turn, she shows a paper doll of her mom — and she looks perfectly fine!  Ravyn tells  her classmates that even though her mom looks healthy, she’s not! Her mom suffers from an invisible illness called fibromyalgia and its evil sidekicks.

 "Ravyn’s Doll helps children understand an invisible, 

chronic illness and explain it to others." 

~Jan Chambers, 

President of the National Fibromyalgia and Chronic Pain Association

I am so excited about this book. It is truly different from anything else available, and it is needed. I am honored to have the opportunity to give a review, which you can read when the book is published. Please join me in wishing Melissa great success as a soon to be published author. Congrats, my friend and thank you!

Conclusion

I did this interview because I wanted you to know more about Melissa. When she first asked if I could help as a mentor, I had no idea how rewarding that would become for me.

Not everyone has the same talents, and what a blessing that is. If you are an advocate in waiting, don’t dawdle; reach out the way Melissa did. You have something to share and it’s important that we keep the torch lit.

“Everyone has been made for some particular work,

and the desire for that work has been put in every heart.”

~Rumi

I am so proud of Melissa’s achievements, but most of all, I am proud of the example she sets for her daughter on overcoming obstacles, turning them into triumphs. This is a lesson we can all learn and carry with us throughout life.  

You can subscribe to Melissa’s blog, Fibro Warriors ~ Living Life, to receive current news and information on giveaways.

fibrowarriorslivinglife.com

Besides being a staunch advocate and a National Fibromyalgia and Chronic Pain Association Leader Against Pain Melissa is a Chronic Illness Blogger and contributing writer at Prohealth. You can connect with her on Facebook and Twitter.

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"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.