For South Asian women, it’s not just medical gaslighting that pervades their ME/CFS diagnoses

Shehla Ali from About M.E. looks at the racism and discrimination that pervades healthcare for South Asian women living with myalgic encephalomyelitis (ME/CFS).

“Is everything ok at home?”

“You’re too young to have these symptoms”.

“Are you making it up?”

Based on true events, these are some of the conversations I had with medical specialists. Before I was diagnosed with ME/CFS, FND (functional neurological disorder) and fibromyalgia, I was experiencing unexplained symptoms and began to experience drop attacks, migraines, chronic fatigue, and pain all around my body.

What happened?

A year prior to that I was hiking mountains. I reached my seventh continent, Antarctica, and worked around the globe during that year. I travelled solo, I was an avid gym-goer, and counted my calories. I thought the lifestyle I was living was ‘healthy’. So what exactly happened? Honestly, I’d love to share the root cause. I definitely have my theories of multiple factors, but I am not a medic.

My body began to feel like it was giving up. After a few blood tests, the nurse told me it was a lack of vitamin D and low iron:

It’s quite common for a person of your ethnicity to have this.

I would not be able to move for hours, which progressed to days and eventually months. I battled with GP receptionists, but eventually an appointment with a GP meant I could get some answers.

I was advised to exercise, to remain positive, and make myself better.

Baseless advice for ME/CFS

But according to the National Institute for Clinical Excellence (NICE) guidelines on ME/CFS, exercise is no longer a suggested treatment:

After an extensive review of the literature, that graded exercise therapy (GET) is harmful and should not be used, and that cognitive behavioural therapy (CBT) is only an adjunctive and not a curative treatment.

The review also found that people who were part of the research for graded exercise therapy did not all have ME. The condition is often associated with ‘just being tired’. There are also different levels of ME:

• Mild.
• Moderate.
• Severe.
• Very Severe.

So having one route of treatment would certainly not work. However, if you are a person of colour, prepare for an extra barrier. Yes – discrimination and racism.

One of the medical staff asked if I was married as that may have something to do with me “having panic attacks”. I was panicking because I was dropping on the floor, experiencing involuntary movements, and became bedridden. It wasn’t because of my relationship status.

It is worth noting that chronic illnesses tend to be underfunded and ME is no exception.

But does this bias and racism have a name?

What is Bibi/Begum syndrome?

Bibi/Begum Syndrome is medical terminology used to gaslight South Asian women, predominantly those who are elderly and may have a language barrier.

The term comes from a UK doctor who struggled with understanding an elderly Pakistani woman’s symptoms. He referred to her as a ‘Bibi/Begum’. The term has been used in a derogatory manner to suggest that South Asian women exaggerate their symptoms which often leads to poorer health outcomes.

Neurologist Fizzah Ali explains:

In my foundation years. It was here that I first came across the term “Bibi-itis.” A decade later I found it was still being used. It happened in the doctor’s office. I was scrolling through a list of patient referrals on my computer wondering out loud what undiagnosed entity awaited me in the emergency department.

So it’s no surprise many South Asian women may feel uncomfortable or unwelcome when seeking care. And they may be less likely to speak up about their health concerns or ask questions due to a lack of trust or understanding.

This can lead to delays in seeking care and poorer health outcomes overall. To be judged by medical staff led me to believe I wouldn’t even be able to get treatment for ME/CFS. I lost trust, hope, and felt isolated.

Racism and discrimination are everywhere

When I began to accept where I was, although still bedridden with ME/CFS I began podcasting. I spoke with a guest about racism; he is Black and I am South Asian (Pakistani).

We spoke about how we were spoken to by medical teams and also within our own communities.

A comment is then posted by a user:

I don’t get what you mean by neither of you are white, I have been treated poorly too.

No one said anything about you not being treated poorly. But our experiences of inequality are valid.

There are people I have spoken to, even if there are only a few, who have had a diagnosis within two weeks. That is their experience. To play the oppression Olympics of who had it worse often means Black and Asian people have their experiences diluted – having to go through stereotypes before symptoms is not ok.

So we can look to different communities, as our own tribes may leave us feeling invisible:

• “But no one will want you”.
• “We don’t speak about these things”.
• “You’re just not being grateful enough”.

But a community can look like people who have not had their voices heard get together.

Even using your own voice can amplify others, but those comments, those biases, are still there. I still have to battle during appointments, with society and people who chose ignorance. I know some days will be tougher than others. I know I am not alone, I just have to continue taking it one-step-at a time.

Featured image via Envato Elements