Breaking the Silence: Stigma & Prejudice in Fibromyalgia 

May is Fibromyalgia Awareness Month. 

It’s the perfect time to share your story with others, find a local support group, or join an online group where you can chat with others like you. 

Raising awareness about fibromyalgia can help reduce the stigma we feel.

What’s it like to live with chronic pain when no one believes you?

Imagine being sick, repeatedly visiting the doctor, only to be told you are fine.

But you know you are NOT feeling fine; you have severe pain and no understanding of what is wrong.

The doctor doesn’t believe you, telling you it’s all in your head.

You start second-guessing yourself: does that mean I am not sick? Am I making this up?

The pain continues, so you return to the doctor, who suggests over-the-counter medications and perhaps an anti-inflammatory.

It persists, and you decide to seek a second opinion. This new doctor listens and refers you to a rheumatologist. After extensive testing, you learn you have fibromyalgia.

This is why awareness matters. Change starts with being seen.
Certified Fibromyalgia Coach^® Ann Garner, and her daughter Lily, receive Fibromyalgia Awareness proclamations from Sioux Falls Mayor, Paul TenHaken
→ Read Chronic Pain Awareness Month: Why It Matters

That was a straightforward story.

For many of us, it takes years of visiting doctors and trying various therapies to receive a fibromyalgia diagnosis.

Imagine what that feels like: doctors don’t believe you, your employer doesn’t believe you, and your friends and family think you must be a hypochondriac. They offer unhelpful, often damaging advice like, "You need to exercise more," "You need to eat better," "You think about yourself too much," "You are a hypochondriac," "You just want attention," or "You need to get a life."

The stigma and prejudice associated with fibromyalgia are things that people living without it do not have to consider.

The first significant step is finding someone who believes you. Anyone who believes you. You may need to visit multiple doctors across different specialties, and they still might not believe you.

That’s what happened to me.

I tried physical therapy for my upper back after a car accident, kept returning because the pain was unbearable. Then a massage therapist mentioned she believed I had fibromyalgia and suggested I see a rheumatologist. 

Finally, someone believed me, and I was diagnosed with fibromyalgia. Fibromy WHAT? How do you spell that?

Emotional Strain of Living with Fibromyalgia

Living with chronic pain, especially when it’s not visibly apparent or easily diagnosable, can be an isolating and frustrating experience. Many people with fibromyalgia look fine on the outside. Being constantly disbelieved and having no one who believes you takes an emotional toll. The constant questioning of one’s reality can lead to feelings of doubt, anxiety, and depression.

Imagine a cancer patient or someone with diabetes being told, "Well, you look fine, so how can you be sick?" This may give you an idea of what someone living with an invisible illness experiences.

For my young daughter, it was even worse.

It took us two years to get a referral to Mayo Clinic. She was diagnosed with ME/CFS, POTS, and amplified musculoskeletal pain syndrome.

When I asked a direct question to the doctor, "Isn’t that fibromyalgia?" the doctor, knowing I had fibromyalgia and other family members did too, still said, "We don’t want to label it at this age."

So instead, we were forced to return to our city to be treated by the physicians there. She may have been diagnosed at Mayo, but they would not treat her. She was not a teenager, so she could not participate in any of their educational programs.

Even with our diagnoses, there were still medical providers, school staff, and people we knew who didn’t believe she was sick. Invisible illnesses can make you look fine on the outside.

One day she might have the energy to walk up school stairs, and the next, she’d be bedridden for days with pain and fatigue.

At a new school, the administrators and school nurse did not believe she was sick; they believed I was a mom who wanted my child to be sick! After the school nurse showed up with a social worker and called DSS because she did not believe my child was sick.

Can you imagine the additional trauma that caused my child and me as a mother?

That left us no choice but to travel to three other states to visit specialists. In year four of my daughter being sick, she was finally diagnosed with fibromyalgia. Within two weeks, we received a letter stating there was no finding of wrongdoing. Keep all your medical correspondence!

Since then, my daughter has been homeschooled, where she can rest as needed and do her schoolwork online.

Fibromyalgia Social Isolation

Without someone who believes you, it wears you down. The lack of understanding from friends, family, and medical professionals can lead to social withdrawal.

People with fibromyalgia often feel misunderstood or judged, which can exacerbate feelings of loneliness. 

You become isolated and feel all alone, tired of medical professionals thinking you are drug-seeking, and your family and friends believing you are exaggerating your symptoms.

Fibromyalgia’s invisible pain and fatigue can leave you second-guessing yourself. That’s why it is so important to educate yourself on fibromyalgia so you know what you are really dealing with.

Fibromyalgia is real. It causes real pain and real fatigue. Working with a Certified Fibromyalgia Coach^® can make all the difference.

Fibromyalgia Advocacy and Awareness

May is Fibromyalgia Awareness Month.

It’s the perfect time to share your story with others, find a local support group, or join an online group where you can chat with others like you.

Raising awareness about fibromyalgia can help reduce the stigma we feel. Sharing our personal stories and experiences can help others understand the reality of living with chronic pain.

Two years ago, my daughter was invited to Washington D.C. to share her story. At one meeting with one of our Senators, there was an age range from 14 to 60-year-old women. It was impactful because the one thing we shared was our struggle with finding care and a community that understood us.

Awareness is spreading—one story, one state at a time.
→ See how we’re Painting the Map Purple for Fibromyalgia Awareness

How Fibromyalgia Impacts Daily Life

Fibromyalgia pain and fatigue affect everyday activities, from work to personal relationships, and people must adjust to cope with their symptoms.

We may make plans, and when the day comes, we have no energy or are in too much pain and need to cancel plans.

From someone on the outside, it looks like the person with fibromyalgia is picking and choosing what things they want to do. Again, many of us with fibromyalgia look fine, so people think we are making excuses when in reality, we are just trying to get through the day.

Finding Support Systems

Finding supportive communities, whether online or in-person, is significant.

Individuals with fibromyalgia can share their experiences and find comfort in knowing they are not alone. The month of May is when I choose to advocate for others like me living with fibromyalgia.

• Find an organization, such as the Fibromyalgia National Health Organization, a nonprofit that brings awareness and advocates for fibromyalgia patients like us. To learn how to get involved in Fibromyalgia Advocacy, check out their Fibromyalgia Advocacy Training to learn more about State and City Proclamations.
• Share Fibromyalgia Awareness posts on your social media pages.

Action Steps

Consider getting involved during the month of May, particularly on May 12th for Fibromyalgia Awareness Day, and see how you can bring awareness to your community. Contact your city or town to find out what is needed to get a Fibromyalgia Awareness Proclamation. Directions can be found at: Fibromyalgia Advocacy Training. Look for local fibromyalgia groups or chronic pain support groups to join. 

Find others who understand your day-to-day life. Making new friends who also have fibromyalgia can be rewarding. Talk with your friends and family members, and let them know how they can best support you. Consider working with a Certified Fibromyalgia Coach^®.

~ Signing off, Authentically Ann, Fibro Family Coach