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#What'sThatSmellBoss?

Visibility for what's Invisible

There are so many social causes in the world that I am sure if someone decides to list them all, it would be a really difficult task. Is it possible, the entire listing that covers everything? I seriously doubt.

Are the solutions possible? I believe so.

There are several known causes we are aware of right from the day we got educated enough to understand things in a broader sense. As we grow, some of us try to do whatever little or more we can to support some causes. To start with, we do not litter, we save water, save electricity, help the needy, plant some trees... Some of us have the will power to fight corrupts / corruption and some of us do not bribe or buy things in black.

But until something appears in big bold letters in the leading newspapers followed by major media coverage OR until we are directly affected by a thing, we do not know about certain causes that genuinely need attention and solution.

Like the Invisible Illness called Fibromyalgia. Yes, it is known as Invisible Illness for obvious reasons, I did not coin the term! Simply type it in the Compose Mail field in GMail and the red crooked line under the word tells you that it is still an unrecognized word out there!

I am blogging here to generate awareness about this debilitating condition and the potential solution that though does not cure this incurable illness but at least allows people with the condition get a general understanding and acceptance in society... have a better quality of life.

Fibromyalgia affects millions of people across the world (an estimated 10 million in US, 3-6% of world population, many in India, but nobody knows the percentage!).

So what is Fibromyalgia?
Fibromyalgia (FM or FMS) is defined as a
chronic disorder characterized by widespread musculo-skeletal pain, fatigue and tenderness in localized areas.


Fibromyalgia patients have a supersensitive Central Nervous System. Researchers associate it with an imbalance in brain chemicals called neurotransmitters. Fibromyalgia brings with it innumerable problems ranging from widespread excruciating pain all the time, problems with memory and concentration, fatigue, stiffness, depression, anxiety, hypersensitivity to light, heat and sound, dryness in mouth, chronic fatigue, sleep disorders, bowel and bladder abnormalities, reduced ability to exercise... to name a ‘few’! 
Fibromyalgia Symptoms

The above or the fact that the condition is incurable, however is not the worst part. Ironically, the worst part is that people with fibromyalgia do not look sick. Additionally, there is absolutely no awareness about it in India. Consequently, no one believes what the patients are going though every single minute. No one believes that the person is seriously not able to do several 'normal' things. It adds to the stress and worsens the condition furthermore.

The persistent pain disrupts the everyday life of the patient and many are left jobless. Certain studies reveal a significantly higher suicide rate among FMS patients as well. 

Another problem is that many doctors too aren't aware of the condition. And there are no direct tests to determine the condition as well. Hence it is very often misdiagnosed. Ask any fibromyalgia patient and I can assure at least 80 percent were misdiagnosed initially and went through wrong treatments.
Some medications offer some relief. But the pain does not go. And the emotional pain one faces due to the ignorance and indifference of family, friends and colleagues is beyond description.

There was a time people were not aware about cancer / AIDS. Awareness did a lot in helping people understand things, take precautions and get diagnosed in time. I hope people learn about  fibromyalgia as well. As currently, many people who have the symptoms do not even know what kind of specialist should be consulted. General physician or orthopaedic? No, one must consult a rheumatologist who knows what fibromyalgia is.

So what can be done? What is the potential solution?
  1. Please read about it and talk about it. Help generate awareness.
  2. If you or someone you know experiences symptoms similar to FMS, please see a rheumatologist without delay.
  3. If you know someone with the condition, accept the fact that they cannot often do the simplest things. Like brushing teeth in the morning or filtering the tea. Like travelling in train while holding that handle. Like sitting or standing or walking for more than 30 minutes at a stretch. Like doing all the household chores everyday. Like working full time. Like planning pregnancy while on medication. Like leaving medication to plan pregnancy...
  4. Do not show sympathy to the patient. Just understand what he / she goes through.
  5. If you run a newspaper, magazine or blog, please have some articles on fibromyalgia so that everyone can know what it is all about.
  6. US offers Social Security Disability benefits to patients with fibromyalgia. In India, at least let's get started with understanding things. However, it would be great if someone can take the initiative to see if fibromyalgia can can be listed as a disability (as it reduces an individual's capacity for normal work or engaging in a gainful employment or occupation) in India.
Only a fibromyalgia patient truly knows what lack of awareness leads to. I know. I was misdiagnosed twice before. It took me three years to understand and make people I know understand things by talking about it, through social media and through a fibromyalgia awareness blog. If you help in raising awareness, it could help many.


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This post has been written as an entry to the contest ISB iDiya for IndiChange organised by Indiblogger and by Indiblogger in association with iDiya (http://www.isb.edu/idiya), ISB's National Social Venture Competition that aims to stimulate, enable and develop high-impact, self sustaining social businesses in India.



7 comments:

  1. Fabulous blog post. I have FM and have been in pain for 27 years only to be diagnosed last year with it! I will do my part on mentioning it whenever I get the opportunity!

    ReplyDelete
  2. Thank you Bouncin! 27 years!!! That's a really long time of pain :( I hope you have a good doctor. Where are you from? It's necessary to mention it to people... it not only helps them understand you but also if they know someone with similar symptoms it will help someone get diagnosed in time. Stay in touch and take care.

    ReplyDelete
  3. Remarkable things here. I'm very glad to peer your article. Thanks so much and I am taking a look ahead to contact you. Will you please drop me a mail?

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    ReplyDelete
  4. 5 years and running and i have just been able to make my parents realize that yup, the pain is very and FM is very much real

    ReplyDelete
    Replies
    1. LGV, I can truly understand how tough it can be. Please take care and connect with me whenever you feel like talking.

      Delete
  5. I was not aware of this condition earlier. It's good that you won the ISB iDiya contest, now many people like me will come to know about it.

    Destination Infinity

    ReplyDelete

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