Women and invisible illness

This question hits very close to home, as I have a sister who has a chronic ‘invisible’  illness since she was 19. I found out that every day can be a struggle for her, and by looking at her you would never know that she was walking on glass shards most of the day.

The other day, she was admitted into the hospital, and I can’t count how many nurses asked her “What are you doing here?!” Telling her,  “You’re  young and healthy…” I know their intentions were good but apparently, if she were healthy, she wouldn’t need to be there.

This is what happens to most of us suffering from an ‘invisible’ illness like fibromyalgia, SLE, chronic fatigue syndrome, Celiac disease, hypothyroidism,  lupus, rheumatism, arthritis or even chronic depression, all of which usually affect women many times over than men. These diseases cause lifelong disability mainly due to chronic pain and numbing fatigue, which affects the quality of life in less severe cases while leaving sufferers wheelchair-bound in extreme cases.

But, the irony is that these women look healthy. Other people either say they look  “too young to be sick” and “don’t look sick” and find it easy to discount, ignore and mock their pain. I am writing this article to bring visibility to women who have been marginalized by their ‘invisible’ illnesses.

Invisible illness is called ‘invisible’ because it‘s just that –”invisible.”

In the words of Suman  Damania, a sufferer, “I have fibromyalgia, and a lot of people think that just because I can walk and move without expressing pain or wincing, I am not disabled.”

What’s even alarming is the fact that it’s not just people around the woman sufferer but even doctors who don’t take her seriously and everyone treats her as if the illness was all in her head or as if she were faking it for attention.

I was recently diagnosed with hypothyroidism, which usually causes people to gain weight as well as affecting the condition of their skin, teeth, and heart. Hypothyroidism also leaves me tired, listless, depressed and anxious for most of the day, even with medicines, proper lifestyle and nutrition. But because I’m still slender and look perfectly healthy, I’m already getting people frowning at me, with obvious doubt in their eyes before asking if I’m ”sure” that I have it, as if I might be saying it for attention or to take the day off work. Ha-ha, I bloody wish.

I am fed up and believe me, women out there are also absolutely sick of being ignored and discounted…

What’s worse, most people assume that women with these types of conditions are voluntarily unhealthy; that it is somehow self- inflicted or self-perpetuated.  They believe that because a woman with an invisible illness is always so ill, she must not be taking care of herself, or indulging in unhealthy habits that if changed would suddenly make her better, and therefore less of a burden.

I continually hear people suggesting things like “Well have you tried the such-and-such diet? ” or “Try taking some vitamins and eating healthy or just try to get some rest” etc. Unfortunately, we are surrounded by too many of these well-meaning people who believe if we just eat the right foods/exercise correctly we will be cured. People need to understand that these conditions are just as uncontrollable as any physical disability and to stop constantly undermining our experience.

This is the crux of the problem… but there’s more.

Women have been conditioned by society to downplay their pain and hide it as much as possible. If they make their suffering  known,  people around them get uncomfortable.

Is there space for women to react or talk about their pain without it being passed off as complaining? I don’t think so. I have seen women downplay their chronic pain a lot and consciously try to avoid reacting, but they shouldn’t have to.

My sister recently confessed to our extended family and friends that she ’d been dealing with chronic pain and an ‘invisible’ illness for ten years now. And finally saying it, it’s not only forced her to fully and openly accept what she’s going through (which is hard) but what she said to me was that her life now will be less of an endless void of explaining herself to others. And perhaps it will help people close to her not to view her reacting to her pain as complaining or a cry for attention.