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Living with an invisible disability and seeking wellbeing

two drawings of figures lying in fetal position

I was diagnosed with Fibromyalgia around July last year. For those of you who do not know what Fibromyalgia is, it is a condition characterised by chronic pain spread over some tender points across the entire body. Several other symptoms, such as fatigue, mood disorder, sleeplessness, mental fog, migraines, irritable bowel syndrome are also associated with Fibromyalgia. At times, symptoms like these cannot be measured or determined by tests, which makes them subjective. Therefore, Fibromyalgia is often misdiagnosed as general pain and fatigue.

I remember having chronic pain and fatigue for a long time. It took several visits to the doctors to finally discover what I had. For many years, I was told that my pain was all in my head because none of the tests could reveal what I had. One day, I was in such terrible pain that I was immobilised. I told my partner that if he did not take me to a doctor, I would die right away. He got worried and took me to a pain management clinic. The staff there found an old prescription of mine in their system which stated that I had come to the centre 8 years ago with the same kind of pain. After a few tests, I was diagnosed with Fibromyalgia. I still remember how this diagnosis induced mixed feelings, because now my pain was not in my head, it was real and it had a name. Of course I knew the tough terrain I had been thrown into. But I could tell everyone, “For all these years, you made fun of my fatigue and my pain; listen, it has a name”.

Though I had a name for my illness, I knew life would be getting tougher now. First was the explanation part. To tell my loved ones that I have Fibromyalgia took quite a lot sometimes. I still feel, at times, they do not understand the pain my body goes through on a daily basis. “Why don’t you do some exercises?” some suggest. I understand it comes out of concern, but my body refuses to move in the morning. All I crave for sometimes is a bed of hot water bottles and a dark room. There are days when my brain refuses to process anything ‘resourceful’. I understand it’s a capitalist world and we always want results and products. I fight everyday to produce something fruitful, but at times it is in vain as I lie in my bed hoping for this pain to vanish.

I have been raised to be ‘tough’. Feminist movements across the globe also talk about being tough and about fighting all the odds that come our way. This aspiration of being tough and not vulnerable has impacted my mental health in many ways. For instance, there were days, when I would want to say No to work or not go for a protest because I am unable to walk for a long time. I would hardly speak about this disability to anyone. To not be able to speak, to not be able to show that I can also be vulnerable does impact mental health. Mental wellbeing does not mean to be free from mental illness, it also means acknowledgement of the fact that I have an issue which might hamper my mental wellness if it is not tended to properly.  There are days where I feel I am a burden to everyone around me and I am not enough of a ‘good sport’ to feel excited or happy about positive things that have happened.

Now, I cancel plans; I refuse to walk a lot because my knees have given up on me. Chronic fatigue has taken over my indomitable spirit and I feel tired almost everyday, every hour. I envy friends who can stay up late at night and party. I want to do that too. But Fibromyalgia has taken a toll on my life, and all I want almost everyday is my bed! Sex is exhausting and there are days when I have to think several times before getting intimate with my partner.

I have fought with myself enough and I have realised that I have a real illness. The doctors for a long time tried to convince me that it is not real, and they kept on prescribing pain killers. There was a time when I refused to take a single pain killer injection and began to search for a proper doctor who understands Fibromyalgia. I found a doctor who understands the illness; however, there are no answers from him too at times about some unexplainable symptoms like rashes, swelling, brain fog, and pins-and-needles sensations in my body. He tells me to live my life with them.

The only solace that I have found during this phase is an online support group of people with Fibromyalgia. I find comfort thinking that there are other people like me with similar symptoms. I feel comfort talking to those faceless people who share their everyday struggle, and the strategies that they have used to overcome this or to live with it.

I have a full time job, a partner, three pets and friends. I try and work out my time and availability around these creatures and people. Most of the time, I manage to work around a schedule for myself. But sometimes I fail. I fail to provide an explanation to strangers why I can’t stand in the metro for a long time, why I can’t walk for a long time, why I refuse to engage with people, why I cancel plans, and for me, the invisibility of this illness is the most terrifying aspect that I have to fight everyday. But what gives me solace is that I have started accepting it as ‘real’.

Another thing that I have started doing is to speak about my feelings. I no longer pretend that I am fine. Trust me it works! When I am sick and not well, I don’t feel guilty like I used to earlier, telling people about it. There are times when I am incapable of moving. So I sit back at home, relax and play with my cats. I have realised and accepted that it’s alright not to be able to be functional. I don’t have to be resourceful and I deserve breaks. Being an activist, I had somehow forgotten to take breaks for myself. Now I spend a lot of time with myself, doing nothing! It helps.

हिंदी में इस लेख को पढ़ने के लिए, कृपया यहां क्लिक करें।

Cover Image: Pixabay

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