So “you look fine” can feel like denying. “Have you tried exercising more?” can feel like lecturing. “Should you really be lifting that?” can feel like overprotecting. And the silence where “that sounds hard” should have been belongs to the missing-understanding side. Naming which move you have just received can be a useful first step.

Why fibromyalgia attracts it?

The same study describes the invisibility and medically unexplained character of fibromyalgia as difficulties in themselves. It also identifies disbelief, lack of acceptance, and stigmatization by partners, family, colleagues, the health-care system, and wider society as major issues in patients’ lives.
A 2017 study in The Journal of Rheumatology included 562 adults with rheumatic diseases—241 of whom had fibromyalgia. It found that invalidation occurred across the conditions studied, but people with fibromyalgia reported the most invalidation. Importantly, invalidation may be deliberate or unintentional: some people are trying to be kind, some are uncomfortable, and some are simply not listening.

What it costs?

Janet Armentor interviewed 20 women with fibromyalgia about how they managed relationships. 
Some close family members and friends developed an unspoken awareness of the illness and offered support. But disbelief and lack of understanding often led participants to avoid social interaction in order to hide from the stigma attached to an invisible and contested illness. 

Avoiding people. Cancelling one plan, then another. 
The comment takes four seconds. The avoidance that follows can last much longer. In the 2017 rheumatology study, loneliness was associated with invalidation from family; because the study was cross-sectional, it shows a relationship, not proof that one comment directly worsens health. Still, it is a reason to take these moments seriously

Four things you can say!!!!

Choose your response based on what you need in that moment—not on what seems most polite. A Swedish qualitative study by Åsbring and Närvänen interviewed 25 women with chronic fatigue syndrome or fibromyalgia and found that coping with stigma included both withdrawal and approach strategies, depending on each woman’s circumstances and goals. Leaving a conversation is legitimate. So is explaining. Before responding, let one exhale last a little longer than the inhale. That buys you a few seconds to choose. You want it to end. “Thanks. How has your week been?” Change the subject. You do not have to explain. You want them to understand. “Fibromyalgia does not show on the outside. That does not make it less real.” You are receiving advice you did not ask for. “I appreciate that you care. I am managing this with the people treating me.” Or, if you want to be heard: “I am not looking for solutions today. I would like you to listen.” You have had enough. “I am going to step away for a bit.” No further explanation required. The research names the pattern; it has not tested these exact sentences. They are simply lines I would try. Use your own words, and expect that some will not land well.

After years of being polite, the line I often use when someone gives me unsolicited advice is: “Hey, congratulations! I did not know you had become my doctor.” This week, choose one response and save it in your phone. The next time someone tells you that you look fine, you will have your sentence ready—or your exit. Which one would you reach for first?

References:
 - Kool MB, van Middendorp H, Boeije HR, Geenen R. Understanding the lack of understanding: invalidation from the perspective of the patient with fibromyalgia. Arthritis & Rheumatism. 2009;61(12):1650–1656. doi:10.1002/art.24922.
- Santiago MG, Marques A, Kool M, Geenen R, da Silva JAP. Invalidation in patients with rheumatic diseases: clinical and psychological framework. The Journal of Rheumatology. 2017;44(4):512–518. doi:10.3899/jrheum.160559.
- Armentor JL. Living with a contested, stigmatized illness: experiences of managing relationships among women with fibromyalgia. Qualitative Health Research. 2017;27(4):462–473. doi:10.1177/1049732315620160.
- Åsbring P, Närvänen A-L. Women’s experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qualitative Health Research. 2002;12(2):148–160. doi:10.1177/104973230201200202.