“You have what’s called Lupus. We can talk through what that means later but these test results are concerning so we need to do more, right now.”

Admittedly, I’m paraphrasing. I remember the feeling of urgency around my diagnosis, the panic fizzing around the room with the knowledge that I’d previously been sent home when I should have been admitted to a hospital, but not all of the exact words because of the brain fog and pain and the exhaustion- the type where I’ve barely been able to lift my head up for weeks.

This is the reason my Dad is here, keeping a respectful distance but a watchful eye that I’m not dismissed, again.

It’s interesting, my Dad being here. I navigate a mental tightrope of our current set-up being both an utter privilege and totally infuriating.

I love having the kind of relationship with him that means I can bring him into appointments with me and feel unquestionably safer and unconditionally supported.

We have a non-judgemental relationship, and his brain is very practical while mine (when it’s working properly that is) is more emotive. So we’re a good problem- solving team, my Dad and I. He’s a true ally.


On the other hand, I’m furious about the tangible shift that happened when I bought a middle-age white man into medical spaces with me.

I’m angry that after initial appointments where I was patronised, embarrassed and sent away, without answers or treatment while in debilitating pain, my Dad’s gentle suggestion that “maybe I can come with you next time” seemed like the accepted common-sense pathway to better care.

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At appointments, I’ve been appalled at the increased empathy we’ve been afforded as a package, the notable difference in respectful language choices and how sometimes, even though my Dad makes an active effort to sit in the corner of the room, the Doctor directs explanations to him rather than to me: “Your daughter’s results show…”


Now that I have a diagnosis, I have a specialist who is everything you could want in a medical professional. He is thoughtful, thorough and provides measured information. He checks in on my mental health as well as my physical health.

He talks to me, and about me, like I’m a human being. He cares if I’m ok. There are times when considering the stark contrast in my experience of medical professionals is overwhelming.

Lupus is an auto-immune disease that can attack your immune system, organs and joints, sometimes all at the same time. What an overachiever! It is a condition that disproportionately affects women; Lupus UK puts the ratio at 9 women to every 1 man diagnosed.

Lupus also predominantly affects women of colour, particularly women of Afro-Caribbean, Asian and Hispanic heritage. Frustratingly (but sadly not surprisingly) the gendered and racialised reality of Lupus results in many barriers, principally that the disease is painfully under-researched and underfunded.

Diagnosis is also known to be extremely tricky, with patients often dismissed and misdiagnosed for years before receiving accurate answers. The aggressive nature of Lupus makes this frightening. Being dismissed one too many times could, frankly, be fatal.

I’m concerned about the treatment of the women going through this who don’t benefit from the same immense levels of privilege that I do; white, able-bodied, straight-sized, university-educated, fluent in English, with a trusted male loved one able to attend appointments with me.

When I was diagnosed, my best friend said to me “this is a woman’s disease so we’re going to have to shout four times louder”. Consider this the start of the yelling.