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Three Black and disabled folx (a non-binary person in a power wheelchair, a femme leaning against a wall, and a non-binary person standing with a cane) engaged in conversation. All three are outdoors and in front of a building with two large windows.

BY Leo Hynett

Healthcare

Life with Symptomatic Sickle Cell Trait

Distilled Post met with Mwape Miller to discuss life with symptomatic Sickle Cell Trait and the challenges of getting her voice heard.

OCTOBER 26  2021

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Mwape Miller is an author, artist, traveller, cook, and music lover. She is also someone with symptomatic Sickle Cell Trait (SCT).

Sickle Cell Disease (SCD) is a group of inherited health conditions that affect red blood cells. It causes some cells to take on a sickle shape, which can result in restricted blood flow and severe pain that can last for days. SCT is where people inherit one sickle cell gene and one normal gene – they carry the trait, but do not typically experience symptoms. 

However, in some cases, people with SCT can experience the extremely painful episodes known as Sickle Cell crises. In her book Symptomatic: Life of A Sickle Cell Carrier, An Invisible Disability – My Story, Mwape explores the challenges of having SCT and being symptomatic.

For a long time, Mwape struggled with having her experience taken seriously. In fact, people in her community who had personal experience of SCD noticed what she was going through long before it was picked up by professionals. Mwape experienced lengthy and recurring pain crises, subsequent struggles with her mental health, and challenges surrounding her fertility. Despite this, because her experience does not fit the conventional boxes available, she struggled to be heard.

People with SCD often struggle with having their needs understood by healthcare professionals. This can vary from not getting adequate pain medication to deadly errors in care. For Mwape, someone with an even more misunderstood experience of Sickle Cell crises, having her voice heard became even more complicated.

Spotting the patterns

‘I journal a lot which helped me reflect on everything. All these symptoms, the headaches, the crises that lasted for months, and how I was feeling mentally would go hand in hand. So I started noticing that there was a pattern and I just thought, oh my gosh, this is what I’ve gone through my whole life.’

‘It’s clearly affected my menstrual cycle all my life,’ Mwape commented, and she isn’t alone in this: 37% of people with SCD who have periods experience crises every time. ‘I looked back and read things that I wrote when I was a lot younger and thought, “all the triggers are there, I just never realised them”.’

Since joining Eleven Health – the first person with Sickle Cell Trait to do so – Mwape has been able to easily identify these patterns as they occur:

‘I’ve been able to monitor my sleep patterns because I know how I feel when I don’t have enough rest. I’m doing a lot better, I’m able to track my mobility as well, my exercise, my pain levels. I’m tracking my oxygen levels as well, and my pain levels and my oxygen levels seem to coincide a lot. Last year when I was having headaches and blackouts, I believe that was where my oxygen levels are dropping, but I didn’t have the means of tracking it at the time.’

‘Now that I’m able to actually see the evidence: I’m able to screenshot the readings and get the report as well. So when I’m telling haematology and my GP what I experience, there’s evidence in black and white that backs up my story. Eleven has really helped in that respect.’

 

Creating community

‘Finding others in the community, especially Chanel from the Eleven team who has been such a lifesaver, has been amazing. On other forums I joined for sickle cell patients, nobody wanted to know and I felt like I didn’t have a right to be there because I ‘just’ have SCT, and yet I suffer. It’s been great to be heard.’

‘I experience a lot of stigma. People say things like “you don’t look ill” and “you can’t possibly be in any pain”, and I think a lot of people with Sickle Cell experience that. We learn to be strong because we have to be.’

Mwape works in mental health, so a lot of the people around her mostly understand when she’s struggling, but they don’t quite understand her experience. ‘I did two or three sessions with a mental health counsellor who just didn’t get it. He was great, he was lovely, but he just didn’t know the pain of sickle cell, and I thought, well, that’s pointless.’

It’s hard for anyone who does not have experience of Sickle Cell to truly understand the effects it has on someone’s mental health. This is why Eleven provides consultations with therapists who understand the unique challenges and pressures of life with Sickle Cell.

‘I’ve had some terrible experiences with health professionals, but also some great ones; I had an amazing counsellor from the Sickle Cell and Thalassemia service in Leeds who went above and beyond, she checked on me outside work hours, and still checks in to this day.’

 

 

Mwape runs a group for people with symptomatic SCT, runs an SCT YouTube channel, and holds regular Zoom discussions to amplify symptomatic voices. For more information or to find out more about her books you can reach out to her here.

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