As we commemorate Black History Month, it’s crucial to recognize the significant achievements of Black individuals and acknowledge the challenges they face, especially within our chronic illness community.
During our #CreakyChats discussion titled “Honoring Black History Month,” we gained valuable insights into the experiences of Black patients and how they find hope and support from doctors, family, and friends.
This month, and every month, take the time to listen and learn, reflecting on and raising awareness of racial and ethnic disparities within our chronic illness community.
Seeing a Doctor That Looks Like You
“I’ve never had a Black doctor, but I think it might be nice to not have to either over or under explain every time and hope I threaded the needle.” — @RabbitRichards
“I haven’t had very many HCPs that look like me, and that’s been bad. I’d love to see somebody that didn’t require so much of an education about what my life is like.” — @DawnMGibson
“Living in San Antonio most of my doctors were Brown (Mex-American), and they understood Black culture more. Currently only my psychiatrist is Black, which is so important as she understands the things I don’t say.” — @onlylight210
“Seeing Black doctors, especially Black women, always gets me hype. When I run across one, and she gives me that knowing smile and acknowledgment, it is everything.” — @SynceNerd_Carli
Finding Shared Experiences
“I’ve met a few Black women who have fibromyalgia but never with idiopathic intracranial hypertension (IIH). I think I met one Black woman with IIH on Twitter, but that’s all. Including FB groups. It’s hard to not have people like you who can relate to your experiences, but I suppose I’ve accepted it.” — @Mae_DayJ
“While it saddens me to see so many other Black women, men, and children diagnosed with lupus, it can be frustrating when our voices aren’t being heard when we are affected most. I am thankful for the sense of community and solidarity of our shared experiences.” — @TiffanyAndLupus
“I’ve seen many other Black people with my health issues especially since COVID-19. It helps me feel seen and less alone. It helps me find community and understanding because many Black people who don’t have ME/CFS just don’t get it.” — @bibicosplays
“It’s still sad to watch certain friends support their white friends while suggesting that I’m exaggerating my symptoms.” — @StLuciaYoga
Speaking to Family About Chronic Illness and Disability
“It used to be swept under the rug but now they openly discuss issues happening with them and others (even mental health). I think this has a lot to do with my cousins and choosing to actively break cycles and name the things we encounter as we navigate life.” — @SynceNerd_Carli
“From my own personal experience, my family considers chronic illness/disability as something the person impacted should shut up and let others fix, as if the chronic illness/disability happened from a falling of their own.” — @Xtel007
“I feel great that my generation of cousins has more modern and healthy ideas around physical and mental health, trauma, and boundaries. Many of our elders were more into respectability stuff, just like their peers.” — @DawnMGibson
“I started to talk about everything that was happening to me, especially with my mother. She came to appointments with me. She saw the light first, quit working to take care of me, and was huge in bringing the rest of them around.” — @Tinu
Dealing with Racism and Chronic Illness
“I didn’t face racism when I was first diagnosed four years ago because I had a somewhat prestigious career and great insurance. When I lost my career and insurance, that’s when I began being treated badly. So I had to reach deep and advocate for myself.” — @onlylight210
“I find that vocalizing and processing my experiences surrounding racism, chronic illness, and medical gaslighting with my Black friends, family, and community members helps me work through these emotions. They hold space for me and validate my feelings.” — @TiffanyAndLupus
“Honestly, the gift of support and validation from the Black patient community has been everything in my patient journey.” — @migainesallday
“I am team boundaries and happiness. I try to center my happiness, health, and peace, no matter what. Black women are often raised to be of service before meeting their needs and desires. It’s not right, and only we can right this for ourselves.” — @DawnMGibson
Recognizing Black Patient Advocates
“Shout out to my sisters @GoldenMoe, @heynaehey_, @raquelonpurpose, and many many more.” — @SynceNerd_Carli
“I cannot possibly pick one person? The community I’m a part of, as well as the one I’ve created, is literally keeping me alive right now. One person I don’t thank enough is @RheaBoydMD — the work she did when #COVID first appeared saved millions of lives.” — @Tinu
“I met @TiffanyAndLupus and @SynceNerd_Carli on Twitter and then in person a million of years ago and now I can’t imagine my life without my girls.” – @Xtel007
“@Tinu has made a big difference in my life. When I was having a very difficult time, she created a community for me and others. She brought us all together. She always supports me and my work. I’m so grateful to know her and call her my friend.” — @bibiocosplays
Join Our Monthly #CreakyChats
Our monthly, patient-driven X (formally Twitter) discussion, #CreakyChats, explores topics that are important to the chronic disease community. During a one-hour moderated chat, we provide a space for people to discuss pressing issues facing the arthritis/chronic disease community. You don’t need to be an X-pro to join.
During #CreakyChats we encourage everyone to share their strengths, challenges, and experiences — that is how we can help and support people as they navigate life with chronic disease.
The ChronicHue Community
ChronicHue is a monthly virtual community empowering melanated folx living with chronic illnesses and disabilities. ChronicHue aims to connect Black, Indigenous, and People of Color/People of the Global Majority together in a space created for us, by us. In these virtual spaces BIPOC patients can have honest and open discussions away from microaggressions, racism and systemic biases often encountered in chronic illnesses spaces. Sign up to receive monthly notifications about ChronicHue meetings.
