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Roxanne sits on a bike. She's wearing an orange beret and has fabulous long red nails.

What being Black with MS means to me

Roxanne

It's Black History Month and I find myself sitting here reflecting on my own personal journey as a person of colour with MS.

Words like isolating, under represented and ignored comes to mind.

For me being a person of colour has had a big impact on my MS journey and diagnosis overall.

Being misdiagnosed

I first presented with MS age 18. I woke up one day with typical MS symptoms. Double vision in my right eye and intense headaches.

I was rushed to the hospital. They tested my spinal fluid, but didn’t check it for oligoclonal bands. In that test if doctors see a pattern of two or more bands, it’s a strong sign that you might have MS. They gave me an MRI but didn't image my spine.

They diagnosed me with lupus, benign intracranial hypertension and antiphospholipid syndrome.

This I now know was a misdiagnosis.

Age 26 my disease progressed, I could barely walk or raise my hands above my head.

Yet I was still told I had lupus. This didn't seem right to me, I knew people with lupus and they were not experiencing the same things I was experiencing.

My eventual diagnosis with MS

I had a bad episode and was rushed to a different hospital. They had no knowledge of me so they decided to retest everything.

They tested my spinal fluid including my olicoglnal bands. They imaged my brain and my spine.

A week later I was told I had MS.

My original hospital wouldn't accept this diagnosis for a year, giving me no MS based treatments but I persisted. Finally they did. They couldn't ignore the multiple brain and spinal lesion progression.

Read more about MS diagnosis

I thought the hardest part was over but I didn't know this was just the beginning of a life long story of self-advocacy as a person of colour.

Finding my community

Yes I was diagnosed and that was great. But when I looked around me I realised I was alone.

No one in my local MS groups were young or of colour. No article or drug testing was created with someone like me in mind.

I couldn't find my community. It was like we didn't exist. This has pushed me to become the advocate I needed.

At 32 years of age now this year I've managed to find a community online. A community of people who resemble me, people my age, people my colour.

This may sound trivial but as a disabled person of colour you deal with different things then everyone else.

Giving voice to our problems

I still deal with the prejudice of what it is to like be Black and disabled. I get judged daily.

She's too young, she's brown, she's lying.

It's like people find it harder to accept a Black disabled person in life.

I still get dirty looks when pulling into a disabled bays. People still don't make room when I'm using my mobility aids. I have to carry my card around that says that I have multiple sclerosis so people can believe what I'm saying.

But I still stand tall and proud not for me but for all the msers that come after me. I started a podcast to talk out our problems so the voiceless have a voice.

So their lives are a little easier and brighter on this journey called MS.

It's hard but like the activist Angela Davis said: "I think the importance of doing activist work is precisely because it allows you to give back and consider yourself not as a single individual who may have achieved whatever but to be a part of an ongoing historical moment.”

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