Living with Lupus: A Conversation with Mariama Alawiye

Mariama Alawiye

This Lupus Awareness Month, I’m honoured to share the story of Mariama Alawiye—someone I’ve known personally for years, and who has recently been using her voice to raise powerful awareness about life with lupus. Mariama’s story is one of strength, vulnerability, and deep honesty. After living with unexplained symptoms for over a decade, she was finally diagnosed with lupus, a chronic autoimmune condition that disproportionately affects women of colour and often goes unrecognised or misdiagnosed for years.

Lupus occurs when the immune system attacks healthy tissues and organs—impacting everything from the skin and joints to vital organs like the heart and kidneys. The symptoms are complex and varied, which means many people, like Mariama, spend years being dismissed or misdiagnosed. We've seen this pattern echoed in many women’s healthcare journeys—most recently in the case of professional boxer Georgia O’Connor, whose pain was repeatedly ignored before she finally received the care she needed. For Black women, the barriers are even higher, shaped by the intersections of race, gender, and systemic neglect.

In this conversation, Mariama opens up about her diagnosis journey, the emotional and physical toll of lupus, and the importance of community, compassion, and cultural awareness in navigating chronic illness. Her story is not only a call for visibility—but a reminder that no one should have to suffer in silence.

Interview

Kaysha: You’ve been so open recently about your experience with lupus. Can you take us back to when it all began?

Mariama: The first time lupus presented itself to me was in 2008, when I was pregnant with my son. I used to go to the hairdressers a lot, and one day my hairdresser said to me, “I think you've got ingrown hair at the back of your head.” I didn’t think too much of it at the time, but it started to get worse. It was really itchy. I went to the doctors and they didn’t know what it was.

Within six months, it turned really bad. My scalp would bleed, and pus was coming out of my head—but no one could help me. So I went online and did some research and came across a study about Manuka honey. I drank Manuka honey, and that stopped the psoriasis.

After that, I just carried on as normal. But then it started developing in other places in my head. Same thing—doctors couldn’t tell me what was going on. They gave me steroid creams, but nothing was really working. That’s when I started to wear wigs.

Kaysha: That must have been such a difficult time, not having answers.

Mariama: Yeah, I didn’t know what was going on with my head. Fast forward to 2016, when I was starting up my food business, I started getting lumps at the bottom of my legs. I thought it was the heater in the kitchen, because I suffered with Raynaud’s disease, which I didn’t know was linked to lupus. I’ve always had cold feet and hands.

In 2018, I went back to the doctors and saw an Asian woman, a duty doctor. I went through my symptoms with her, and she said, “I want to send you for a special test that’s only for Black and Brown people.” It was called the ANA test. I said okay, and I went for it.

At that time, I was working in IT, in the British Council. Then I got the call: “I’m really sorry, Mariama, but you’ve got lupus.” Just like that. Everything changed for me after that.

Kaysha: And you found out you had more than one type of lupus?

Mariama: Yeah, at the time I was told I only had one type, but I actually have three. For me, it’s mostly skin-related. It really affected my confidence. I used to be very social—always going out, always eating out. I don’t do that anymore. I’m indoors a lot more. I just don’t feel confident like I used to.

But when I look back on my childhood, I was always sick. Always catching mumps, always ill. I think I had childhood lupus, but it didn’t fully show up until the pregnancy with my son. I think that’s what triggered it—the pregnancy brought it all out.

Kaysha: Was that your first pregnancy?

Mariama: No, it was my second. My first pregnancy, with Benjamin—he passed—I didn’t have any symptoms that I can remember. No problems with my hair, no lupus symptoms at all. It was only with my second son that it really started.

Kaysha: So it took 10 years to get a diagnosis?

Mariama: 10 years. That’s what hurt me the most. 10 years of running around, back and forth to doctors, trying this and that—and nothing worked.

Kaysha: And it took a culturally competent doctor to say, “Let’s test for this”?

Mariama: Exactly. Lupus is a Black female illness, but hardly anyone knows about it. Even now, so many people have it, or know someone who does, but there’s still so little awareness.

Kaysha: Can you explain what lupus actually does?

Mariama: It’s an autoimmune disease. The body attacks itself—it attacks tissues and organs. Depending on the type, it can be really serious. Like, SLE (Systemic Lupus Erythematosus) is organ-based. The one Seal has is skin-related. He hasn’t got SLE, but he’s at high risk for skin cancer.

Kaysha: I actually learned about Seal recently—his interview came up on my YouTube. I had no idea he had lupus.

Mariama: Same with Michael Jackson—I only found out recently he had lupus too. It explained the glove. Everyone thought he was bleaching his skin, but it was the lupus.

Kaysha: Does it affect pigmentation?

Mariama: Yes. It starts as an itch, then it becomes a scab. I used to heal back to my natural colour, but now it leaves pink patches—it’s progressed.

Kaysha: Did doctors run any other tests in those 10 years?

Mariama: No, just standard blood tests that always came back normal. I think part of the reason was where I live—it’s not a Black area. They’re just not exposed to it enough to recognise it. I think if I lived in a more diverse area, I would’ve been diagnosed sooner.

Kaysha: That’s why sharing this is so important. People need to know what to look for. And for those who aren’t familiar—what is the ANA test?

Mariama: It’s a blood test. ANA stands for Anti-Nuclear Antibody. It looks for anything foreign in the blood. That’s what determines if you’ve got lupus. And they don’t offer it to you—you have to ask.

Kaysha: What’s the impact of lupus day-to-day?

Mariama: It can be really debilitating. In 2018 to 2019, I was in bed for a whole year. My son was still quite young and had to become more independent. I was just tired all the time. With lupus, emotional regulation is hard too. You crash a lot. One day I can be dancing in my front room, and the next I don’t want to talk to anyone.

That’s why I dance a lot—it keeps me going. I think that’s why I don’t get swelling and pains like some people. I try to stay active and laugh a lot. But the hardest part is that you can’t plan anything. You never know what each day will bring.

Kaysha: There’s this ableist narrative that people who cancel plans are just “flaky”—but many just don’t see what’s going on inside.

Mariama: Exactly. People don’t realise we’re not lazy—we’re dealing with something invisible. That’s why I don’t work anymore. I couldn’t commit to showing up consistently.

Kaysha: Where are you now in terms of accepting lupus?

Mariama: I’ve accepted it more now because I’m exposing it, not hiding from it. And honestly? TikTok helped me more than friends or family. The support I’ve had there is like therapy. Connecting with strangers who understand—it’s powerful.

Kaysha: That sense of community is everything.

Mariama: Yes! That’s why I want to revive a group I started in 2020 called Comfortable in My Skin. Back then, it was about confidence, but I want to bring it back for people with lupus and autoimmune diseases. A place to check in, meditate, support each other.

Kaysha: What do you wish more people understood about lupus?

Mariama: That it’s invisible. Just because you can’t see it doesn’t mean it’s not there. I sit at the front of the bus sometimes and people look at me like I don’t belong there. Do I need a badge on my forehead?

And as Black women, we’re under more stress than most. We need to be more aware of our bodies. Notice changes. Don’t dismiss things. We carry a lot of masculine energy. We need to soften. Our cells matter just as much as our organs.

Kaysha: If someone’s just been diagnosed, what would you want them to hear?

Mariama: That they’re not alone. There are thousands of us. Try to find a buddy, someone to share the journey with. Don’t hide it. Speak up. Use your voice.

Kaysha: And what about the people closest to someone with lupus—how can they support them?

Mariama: Just check in. A simple “Are you okay?” makes a huge difference. You don’t have to do much—just let us know someone’s looking out for us.

Let’s keep the conversation going

You can follow Mariama on TikTok at @full_of_melanin and support her mission to raise awareness for lupus and autoimmune conditions. If you’re newly diagnosed or living with chronic illness, know that your experience is valid—and that you don’t have to navigate it alone.

If you’d like to learn more about lupus or access support, visit Lupus UK — the national charity supporting people with lupus and raising awareness across the UK.