Fibromyalgia Pain: My Experience with an Invisible Disability

I live with Fibromyalgia. No, it is not fibroids, no, it is not fibrosis! It takes a great deal of effort for me to explain to people what fibromyalgia means. To put it simply, it is chronic musculoskeletal pain. Sources estimate between 3 and 26 million Americans suffer from this hidden condition.

In India again statistics are unavailable and the National Health Portal describes it thus:

“Fibromyalgia is chronic neurological disorder that involves widespread pain, tenderness, fatigue, and other symptoms. It is common in middle-aged women but can affect patients of either sex and at any age. 2-4 percent of people may be affected by fibromyalgia. The term fibromyalgia means pain in muscles and fibrous tissues (tendons and ligaments). Fibromyalgia is still considered a medically benign disorder, as it does not cause any serious problem or physical deformities, or loss of life. But it has a profound effect on the quality of life of the patient because it interferes with a person’s ability to perform everyday activities and affects cognitive functioning such as the ability to think, to reason, to remember. The diagnosis can be made with careful examination and exclusion of other diseases having similar symptoms.”

What is peculiar about this condition that it goes undiagnosed for long and there is no cure or definite treatment protocol other than pain management and physiotherapy and psychotherapy to make the survivor’s life quality better.

On the famous McGill Pain Index some of the invisible chronic conditions including fibromyalgia rate quite high.

SEE ALSO: What is a Pain Scale?

It does have a severe mental health impact due to what is called “fibro fog.” This is a specific type of cognitive dysfunction reported by many people who live with fibromyalgia. It is also sometimes referred to as brain fog, the main symptoms include:

• difficulty with concentration
• memory deficits
• confusion

The reason for the changes in brain function with fibromyalgia is not clearly understood. Pain can also lead to sleep issues and thus further this cycle of brain fog leading to anxiety sometimes severely impairing a person’s ability to work and function fully.

I also live with depression so in my case the two join hands sometimes to raise the bar literally for me for what it takes to survive.

In India not just the awareness but also the access to healthcare specific to invisible disabilities is almost missing. Hence the challenges for people living with these grow manifold.

Another common symptom associated with fibromyalgia is extreme fatigue and lack of energy, that could both be due to the issues of the muscles as well as die to the cognitive function reduced by chronic pain.

India severely needs to address the growing number of cases of all of these conditions and provide them appropriate access and integration. Like The Hidden Disabilities Sunflower Lanyard Program in the UK aims to help others identify when support may be needed for those with disabilities such as autism, dementia, anxiety, or other conditions that may not be immediately obvious to other people.

Many people living with a hidden physical disability or mental challenge are still able to be active in their hobbies, work and be active in sports. On the other hand, some struggle just to get through their day at work and some cannot work at all.

This struggle might not be visible but often people’s unkind reactions to it are visible and also lead to a lot of taboo and stigma for the same.

Invisible disabilities are real, the pain is real. Recognize it.