Highlighting Black Invisible Illness Voices: Myiesha Trumpler
Today we’re sharing our interview with Myiesha Trumpler, a Black chronic illness warrior. She tells us about her struggles with getting diagnosed and how that made it hard to manage pain with no alternatives. Not only that, the way racial perceptions may hinder some from getting the correct diagnosis sooner. That’s why she strongly advocates for the Lupus and Black communities, and also strives to better the medical industry by being a gynecologist.
You can find more of Myiesha here :
YouTube channel: Myiieshaaa
Myiesha recommends Lupus.org as a great resource for learning about Lupus.
*This transcript is auto-generated
Hi everyone my name is Celine and I'm the founder of Flowly or a mobile platform for chronic pain and anxiety management. We basically teach users how to control their heart rate and their breathing to better manage symptoms around pain anxiety and even sleep. A lot of people say it's kind of like meditation for those who have trouble meditating. There's a huge intersection with anxiety and pain population with what's going on with Covid and especially with what's going on with the Black Lives Matter movement and we felt it was our job to highlight voices in our community that otherwise aren't given the platform historically in the health care system. That's why I'm really excited and grateful to introduce Myiesha. Myiesha is a chronic illness warrior and she's from Indiana but grew up in Florida. She has Lupus but is also an advocate for Lupus and she's kind enough today to join us to share her story. So without any further ado, thanks for joining us Myiesha.
Awesome. So I thought we would start at the beginning of your journey when was the first time you started experiencing symptoms from Lupus and what was the journey up to your diagnosis?
When I first started receiving symptoms from my Lupus first it was a about fourth grade around fourth fifth grade. It first started off with just like joint pain in my knees, joint pain in my hands and in my arms and it just like progressed as the years in the norm. It was first diagnosed and looked at as junior rheumatoid arthritis so my child physician used to always prescribe me ibuprofen for my pain. Looks like more symptoms started to come on a family member of mine mentioned that it ran in the family so get it looked at and we went from there was a several years later that you actually got the Lupus diagnosis.
Was that hard to get diagnosed? As I'm sure because I know speaking to a lot of our community especially women in the space they offer a misdiagnosis in the process. Was that something you experienced?
yeah I didn't get diagnosed with lupus until I was actually 15. I started a summer job I began to flare in different ways like I was a really tiny girl and I was flaring to the size of a woman half my size well more of my stuff.
Did you feel a lot of pain like physical pain in your body when you did have flare-ups?
I was to the point where I could not feed myself I just couldn't do anything but right now
you are really relatively young when you're diagnosed so when you're 15, did that change your experience being in school, because having a autoimmune disease and chronic illness at that young age I'm sure it affected how you had to behave or maybe how people behave around you
it didn't stop me from doing what I wanted to do but it did changed how I was able to do things I was really active in Jai I did a little bit of basketball I did a step team and to go on to high school I did hear my eleventh and twelfth grade year so it didn't stop me from doing things but it did have an effect I could say that I had a lot of support some people change the way that they people me some people made thought that I couldn't do this because I had lupus and I didn't like limitations like don't I don't set up a barrier for me you what you wanting me to push more is more about than you saying you can't do this because you have no that's not it
Do you feel like being a sort of young black woman has changed or how has that shaped on how you manage lupus whether it's how you interact with doctors nurses or maybe even just like your classmates or people around you?
I feel like black people in general are strong they have to be strong they start off with limitations like we have a different standard then you have other people believe and I see stuff like when we do something we have to do it 10 times harder they just receive that we are stronger than we are but that we can take the pain
that's backed by data where they did a survey and around 50 percent medic school school students and residents thought that african-americans experienced less pain and that's just not true and so it's it definitely affects especially a young person going through the healthcare system and you have a chronic illness that does exacerbate a lot of pains physical pain and then you have to sort of fight for medication or alternative sources to help manage that pain which is insanely unfair on any young person let alone a black person let alone a woman of color
and when I were younger they prescribed me ibuprofen so it was because I was too young that I couldn't get anything more than ibuprofen for my intense pain and now that I'm older it's like try tone ah maybe that will work no the Tylenol don't work so I rather not take the pain medicine at all I rather just I mean I'm gonna have to deal with anyway because you're not giving me anything to mention this is best trying by natural things next remedies because they feel that we can't take things so they don't give us the pain medicine to manage it I'm just like I want to ask you for pain medicine and but when I do bring it up you're telling me to try taking leave try taking it off and I'm telling you those things aren't working so I don't want to bring it up again because I brought before so at this point it's like I'm begging for pain medicine sorry they're not actually at all
it's so frustrating because we hear that from so many of our users in our community and a lot of people think it's ironic because we are a digital health company doing an alternative form of pain management so why would I advocate for people to get medication and from our team's perspective working with so many people that are in pain that do have chronic illness they're not there's no magic bullet to how you manage your chronic illness and pain what people need is the empowerment to ask for tools that do help them and then be able to explore and maybe integrate different types of pain management tools and it's really unfair when a certain population women and especially women of color aren't given access to these full array of different tools right because I'm sure like growing up did you feel like doctor would introduce you to like new types of pain management or had you tried anything like Flowly before you tried Flowly?
I have in my actually loved it it gives me time to I take time to myself at my M I actually meditate with day I do all the the exercises that it offers and it has really helped me in the last week that I've been using I have been having trouble sleeping these past couple days and when I entered the man that song is like it's ooh is it gets you an automatic relax
talking about you know all these different tools how do you manage your lupus today what are some tools that have been helpful in your journey thus far?
the main thing I knew is I stayed to the schedule that I'm supposed I stay consistent with the medication that I am supposed to take so that easier when it comes to dealing with the pain that comes by itself if you're doing your part and taking care of your body then you can knock out some of the pain all of it but um and I know this
I think is amazing that you have plans to be a gynecologist yeah what can you tell me a little bit about why what inspired you to become a gynecologist and are you starting your studying soon etc
I'm actually not in school right now I'm actually on a break because I wanted to take a break in get my health back in order but I do want to become a a gynecologist I've always been interested in childbirth I'm more sensitive interested in home tobert a childbirth is more of a personal relationship between the parent and the family of a bonding tool between the family so yeah that is it yeah
do you feel like growing up with around a lot of doctors or in the hospital helped inform your desire to become on to become a doctor to kind of you know be part of the system or be part of that ecosystem
yes I feel like that could make you better because I seem like how great doctors treat me I see how horrible daughters treat me I see how great nurses treat me I see Na Hoku nurses treating me and I see like what the hell system needs mmm mentally and I definitely think there needs to be more women of color and black women who are gynecologists
is there any information or resources you'd like to share with people I'm either that has helped you with your lupus so maybe someone was newly diagnosed with lupus or maybe it's for people who aren't aware of lupus and just kind of need to learn more about it
Globus or their variants for me
thank you Myiesha for joining me today I really really value your voice in this overall experience and story of all these invisible illness warriors and chronic illness warriors because there's not enough black voices in this community and even when I'm on Instagram on social media I I see that there is a lack of diversity in the people that are advocating for it and it really affects lupus itself disproportionately affects African American and Hispanic women especially in the early stages of their life and so definitely think there needs to be more advocates like you so I really appreciate you speaking out
yes I always said I was more people around my age when I was first diagnosed with this I was lost I didn't know like I didn't know that face that this disease could have so it would have been nice to have someone to someone my age to give me a perspective of what I was entering into
how can people find you right sure on social media online how can they follow your story
I am on Instagram at my double I e SH triple a two underscores on Instagram and on youtube I am Myiesha Trumpler you can find me at my Easter tumblr
thank you for joining me Myiesha I really appreciate it
thank you for having me
thank you for giving me a chance to share my share my voice