I live with an invisible illness and sometimes I feel invisible too!

12 August 2021

Last year, after a hospital stay, Lori started her blog about living with Crohn’s to raise awareness of the disease and the experiences of Black people who live with it.

She tells us about the importance of this representation, and how she started to find people she could truly relate to online.

I wonder if you will read this.

I wonder if you will see my face and think, “I can’t relate to her”?

I wonder if you might read this and think, “here we go again”?

Up until last year, the only Black people I knew with a diagnosis of Crohn’s Disease were four of my family members.

Living with Crohn's

 As a family, we had never spoken to each other in detail about our daily challenges with managing it. Why?

Well truthfully, upon reflection, I don’t think we fully understood it. I don’t think we realised the impact it has on our lives. I don’t think we made connections between extra-intestinal symptoms and those in the digestive system.

I don’t think we realised that although we all have Crohn’s, it can affect different parts of the digestive tract, and, therefore, affect each of us differently.

I do not think we realised these things because we knew no one else and saw no one else from the Black community talking about it.

Although there is a lot more research now on this disease, historically it was not known to be something that Black people had. In previous times, this has made diagnosis and, consequently, treatment difficult. Before receiving my diagnosis, I was misdiagnosed with an underactive thyroid.

On receiving this diagnosis, I compared myself to my family members because there were no other references to people who looked like me. No publications given to me had photographs of Black people. When I attended appointments at the hospital, I would never see another Black person in the waiting room for the gastroenterologist. When admitted to hospital, I was the only Black person in the bay, reinforcing the idea that I am the only one with Crohn’s.

Without seeing people like us, we couldn’t fully understand the impact, differences in presentation and effects the condition could have on people like us.

The year 2020 is one none of us will ever forget, although a lot of us would probably like to. For me, it is the year when I learnt how strong my body has been and indeed is. Last year, I was admitted to hospital on three separate occasions.

I was treated for a perforated bowel which led to sepsis, and a small bowel resection in October. It is the year where my disease impacted my life in the most massive way to date. It is the year where I shared with all my friends and family, and even the Instagram world that, ‘I have Crohn’s but Crohn’s does not have me!’.

It is the year I researched this chronic illness in ways that I had not before. Such as how certain symptoms will present differently in me, compared to others. For example, skin conditions such as hidradenitis suppurativa.

I needed to understand Crohn's, and understand it as fully as I could.

Venturing into the world of blogging was new to me, and the main reason I joined was to connect with people who were open to talking about medications and surgery for Crohn’s and Colitis.

In this social media world, like the real world, there seemed to be a lack of visible Black people with Crohn’s or Colitis. Whilst this was not a massive deal to me, it did make me wonder if my family and I were truly only the Black people with Crohn’s. However, slowly, ever so slowly, I began to see people.

The greatest community of people with Crohn’s or Colitis and of Black origin seemed to mostly live in America. For the first time ever, I was opened up to a world of people who experienced the same thing as me, and for the first time, looked like me too. In talking with these people, I found that before joining Instagram they too felt they were the only Black people with these conditions.

Most IBD publications and research on Crohn’s and Colitis are based on work without the Black community.

For example, the exclusive enteral nutrition diet leaflet that many of us are used to recommends items such as Bovril, which are not familiar to all communities, including the Black community. I am lucky to have a great dietician, who took the time to answer my questions about alternative products that could still offer the benefits of resting the bowel but be more in line with my everyday diet.

The Black community is under-represented on websites, including this one. Although not intentional (I know this because they kindly reached out to me to write this blog), it can cause a Black person to stay silent and to feel like they do not belong. Unfortunately, this is further reinforced when there is then a lack of engagement with what we post.

Last year, I took part in my first Crohn’s and Colitis Awareness Week.

I worked with Color Of Crohns, Colitis and other Chronic Illnesses (COCCI) in America to raise the voices of black people in the Crohn’s and Colitis community. At the end of a successful week a fellow IBD warrior posted: “I have never seen the voices of the Black community so amplified on Instagram, but more needs to be done in the UK”.

I think it is important to remember that Crohn’s and Colitis affect people of all races. Despite this, there is a widespread exclusion of minorities, and in particular the Black community, in research, literature, and publications. This will ultimately continue to affect treatment and speaking about the challenges of living with these conditions.

We must break down barriers to ensure that everyone is included because, after all, there are more things we have in common than not.

At Crohn's & Colitis UK, we are committed to sharing a wide range of experiences that represent the people we serve, in all their similarities and differences. We contacted Lori to ask her if she'd like to write this blog and add her voice to the stories we’re telling.

We are working hard to work with members of our Crohn's & Colitis UK community who may represent different communities to those we usually represent. We want to reach people and share their stories, regardless of ethnicity, age, disability, gender, sexual orientation, religion, or belief.

If you feel underrepresented in our work, we want to change that.

share your story

Thank you for your patience and your openness.

Together, we can improve and create a safe and friendly space where everyone feels welcomed and represented.