We aren’t invisible, we are made invisible

It is Women’s International Day on 8th March. Let’s talk about women’s health and how we are made invisible

Photo by Majestic Lukas on Unsplash

“But you don't look sick, it can’t be that bad, I need you!” An angry yoga student of mine hissed at me when I told her I won’t be coming back to the studio to teach yoga. I had already been struggling teaching only six hours a week, and I was getting sicker and crashing constantly.

She explained how her pain had gotten better from my particular style of yoga and she had become reliant on it for her well-being. She didn’t believe me when I told her I was unable to teach anymore.

I got the exact same reaction from the owner of the studio: “But you don’t look sick, when can you come back?”

It wasn’t until I became mostly bedbound and unable to walk more than ten wobbly steps that people started believing my illness (ME/CFS) — although a doctor did manage to tell me, when I asked for ambulance transport with a stretcher to go to the hospital, that medical transport is only for people who are really sick and can’t sit up (yup, that’s me).

We talk about a lot of chronic illnesses being invisible, but I find it more accurate to say that we are made invisible. If we were listened to, our illness wouldn’t be invisible. If people saw what we had to give up, our illness wouldn’t be invisible.

Us human beings like to categorise things so it’s easier on the brain to navigate this complex world. And we have categorised illness in a certain way and created the mental image of the ‘real’ patient:

The real patient is pale, clammy and has dark circles under her eyes.

The real patient has pained or distressed facial expressions.

The real patient has comprehensive bloodwork that shows everything that’s broken in her body.

The real patient slurs her speech.

The real patient has shortness of breath.

The real patient lies in bed all day.

The real patient doesn’t wear makeup.

At the beginning of my illness (ME/CFS) I didn‘t fit any of these mental images. I even had friends who didn’t believe me. One of them said: “yeah, well I passed kidney stones and that was much worse!” She compared her limited amount of time in pain to me losing, at that time, more than 50% of my life, being in constant pain and knowing that this is most likely forever, if not for a very long time. She wouldn’t have made that comparison had she believed my words.

I was made invisible. My illness wasn’t invisible. It was visible in the choices I was making (and especially not making), it was visible in the grief I was carrying and talking about, it was visible in me crying in pain, it was visible in all the events I didn’t go to, it was visible by all the lying in bed. But none of this was acknowledged or seen. I was made invisible.

Invisibility of chronic illness is not just a physical absence of characteristics or symptoms of what society believes constitutes ‘the real patient’, it is a social construct that erases the experiences and struggles of those living with chronic conditions.

Being made invisible is incredibly painful. It feels like one’s being is erased, like we don’t matter, like we exist in another world. It exacerbates the emotional and psychological burden we already experience as our bodies erode. And it has real-life consequences as we may not get the support we really need or access to resources and services that help us survive and give us quality of life.

A lot of illnesses that we deem ‘invisible’ are in fact underfunded, under-researched, and therefore misunderstood illnesses — most of them disproportionately affecting women. These illnesses affect men too, as well as trans and non-binary people.

It is no secret that women’s health has been neglected and under prioritised for decades.

While women live longer than men, they live more years with ill health and disability. Women have historically been excluded from clinical trials and have for decades been treated with medicine that was never tested on a female body. Science used to see women as ‘tiny men’.

Women are diagnosed later than men for more than 700 diseases and experience differences in health care delivery. Women’s pain is more often than men’s undertreated and seen as psychosomatic. In a UK nationwide study, 85% of women said they didn’t feel listened to by their doctors.

There are definitely issues with men’s health as well: men die younger and have been excluded from depression studies amongst other mental health issues. Men’s mental health is in crisis.

Also, we need more research and data spanning the sex and gender spectrums.

Had women’s and other voices from marginalised communities been heard and had our bodies not been neglected by medical science, our chronic illnesses might not be so invisible.

Tell me…

Do you feel like your illness or ailment is invisible to others?

Have you experienced not being seen and heard?

What can be done to make ‘invisible illness’ more visible to society?

I’d love to know your thoughts!

Thank you so much for reading this post. If you know someone who could benefit from this, then please share this page with them. You are also more than welcome to share it in your Facebook or other patient support groups.

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