FibroCOVID: A new era of medical gaslighting?
Updated: Nov 5, 2021
Long-COVID & Fibromyalgia
The past few months has brought a terrible realisation: COVID symptoms can last longer in certain people and seemingly healthy individuals can be affected.
A recent study (Davis et al., 2021), states: ‘Patients with Long COVID report prolonged, multisystem involvement and significant disability. By seven months, many patients have not yet recovered, have not returned to previous levels of work, and continue to experience significant symptom burden.’.
Upto now, there are 66 symptoms associated with Long COVID (Post-Acute COVID-19 Syndrome, PACS) and this is by no means a comprehensive list.
Among these, a group of symptoms are being reported as resembling Fibromyalgia, being referred to as post-COVID 19 FM or FibroCOVID (Ursini et al., 2021). As many as 30% of individuals with Long-COVID seem to meet the criteria for this diagnosis which includes widespread musculoskeletal pain, brain fog, fatigue and decreased functional ability among other symptoms.
The study asked a very pertinent question: ‘How are patients, in general practice and other specialty settings, who deserve referral to the rheumatologist after COVID-19 identified for suspected FM?
A 2019 study on the diagnostic pathway of fibromyalgia noted with concern:
1) Two-thirds of individuals meeting the criteria for a Fibromyalgia diagnosis do not have diagnosis 2) Two thirds of individuals diagnosed with Fibromyalgia by physicians do not meet the criteria (Srinivasan et al., 2019).
To put it simply (and kindly), the medical community is very much bewildered regarding the nature and diagnosis of fibromyalgia.
Medical Gaslighting of women with Fibromyalgia
Fibromyalgia is a hidden disability, a chronic pain syndrome with little outwardly visible signs.
Many women with Fibromyalgia have found that their symptoms are often dismissed or misdiagnosed by the medical community. Being disbelieved, and gaslighted is quite the norm for women with Fibromyalgia and chronic pain syndromes .
I once had a physician ask me if I ‘’WANTED’ something to be wrong with me because I was adamant about understanding why I was in chronic pain. This is but a little example of the way women’s pain and health are dismissed, ignored and ridiculed.
Medical gaslighting takes on many forms:
Minimising symptoms: ‘It’s not that bad!’
Blaming symptoms on mental health challenges: ‘Fix your depression and the pain will disappear’.
Blaming the patient for the symptoms: ‘If only you ate healthier, the pain would go away’.
Ridiculing patients for trying to self-diagnose or requesting tests/investigations: ‘I am the doctor, let me do my job’.
These are just a few examples of medical gaslighting. Medical gaslighting can also be silent and conveyed through the physician’s judgemental body language rather than words.
Women with FibroCOVID will be facing an uphill battle in the coming months and years trying to obtain an accurate diagnosis. We are heading towards a new era of medical gaslighting and women as usual will be the ones left behind, unless we are smart about it!
What to do if you are being gaslighted?
KNOW THE SIGNS: Be aware of the different forms of medical gaslighting. A simple rule of thumb is: If you come out of the consultation room feeling humiliated, ashamed and wondering if you are going ‘crazy’, there is a high chance that you have been victim of gaslighting.
RECORD YOUR SYMPTOMS: Ensure that you are recording your symptoms on a daily basis if you feel that the recovery has been patchy. There are a number of journals which can be purchased for recording symptoms or a pen and notebook will work just as well.
BE OPEN: Do not hide your symptoms for fear of being seen as faking it or seeking attention. Keep your physician and your loved ones informed regarding your recovery and any unusual symptoms.
SELF-ADVOCATE: Raise your voice and persist in finding a doctor who will listen to you and do not feel discouraged when met with disbelief.
LOOK FOR COMMUNITY SUPPORT: Support from other women who have been through such experiences can be a tremendous help as you move along this daunting journey. There are many online support groups for women with Fibromyalgia or invisible health conditions.
Join our awesome community on Facebook where we empower women with chronic illness, pain and disability (Unapologetic Women Collective).
Davis, H. E., Assaf, G. S., McCorkell, L., Wei, H., Low, R. J., Re'em, Y., ... & Akrami, A. (2021). Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. Available at SSRN 3820561.
Srinivasan, S., Maloney, E., Wright, B., Kennedy, M., Kallail, K. J., Rasker, J. J., ... & Wolfe, F. (2019). The problematic nature of fibromyalgia diagnosis in the community. ACR open rheumatology, 1(1), 43-51.
Ursini, F., Ciaffi, J., Mancarella, L., Lisi, L., Brusi, V., Cavallari, C., ... & Meliconi, R. (2021). Fibromyalgia: a new facet of the post-COVID-19 syndrome spectrum? Results from a web-based survey. RMD open, 7(3), e001735.