An invisible or silent illness is a medical condition that causes pain and/or fatigue without outwardly changing someone’s appearance or requiring them to use an assistance device, like a wheelchair. When I asked how other people tended to react to their illness, most women had experienced the following scenario. Work colleagues, family, friends and even total strangers would listen to their stories, before replying with
- “But you look so well?”
- “You smile and laugh all the time; how can you be in that much pain?”
- “Chronic fatigue? I have three kids, I already know all about chronic fatigue!”
I feel offended if I’m asked, “Are you sick?” during a make-up free day (I prefer to think of myself as #PastyYetTasty) so if my every day was spent in pain and nobody believed me, I’d be completely exasperated. I had to know more about what life is like for these courageous women.
Receiving a diagnosis.
I’ve learnt that some of the worst parts about having an invisible condition is the disbelief and the scepticism. Imagine being in excruciating pain, or feeling constantly tired, and meanwhile everyone around you is like:
Unfortunately, gender could potentially exacerbate this disbelief. There are studies that suggest that when it comes to diagnosis and pain management, a gender-bias may exist in the health care sector. Additionally, some psychologists argue that we have been socialised since childhood to respond to pain in a gendered way. Their research claims that, historically, men and boys have been taught to ‘tough it out’, while women and girls have been encouraged to be extra-cautious and to verbalise their discomfort. These gender-norms may partially explain why some men put off going to their GP, and why some women in pain are told that they are just overreacting.
My friend Audrey* spoke to me about being diagnosed with endometriosis.
“When I was younger, I lived with my Dad, who didn’t take my pain seriously. He said I just needed to take Panadol and get over it. All of the women on my father’s side have endometriosis, so I guess he thought it was normal without actually knowing what it was. Consequently, I thought that being in chronic pain and lying in bed for a week was normal. When I started living with my mother, she said that this wasn’t normal. It wasn’t until she decided to take me to a gynaecologist that we found out that I had endometriosis. My gynaecologist diagnosed me almost immediately; he explained that endometriosis is very common,” she said.
“I will always remember receiving my diagnosis. My mother was supposed to come with me, but she got caught up in traffic, so my Dad came with me instead. When my doctor explained that I would need surgery, my dad interjected and said, ‘But it’s just period pain, shouldn’t she just take some Panadol?’ The doctor then spent half an hour explaining to my father, on my behalf, the extent of what I was going through. I love my Dad, but it took a doctor, who was a male, for him to finally understand that what I was going through wasn’t normal. My dad then paid for my entire treatment,” she added.