"You don't look like you have #HS (hidradenitis), you look like a member of the production team"...
I think we're desensitized to the power of language until it directly strikes a chord...like when I was told I didn't look like someone with #hidradenitissuppurativa.
We listen, but do we actually hear? We speak, but do we actually think before we speak? We laugh it off assuming intent, but should we have to? Just a few questions that have been lingering in my thoughts this week.
I had a million different ideas for what I wanted to share this week. Well maybe not a million, but I’ve been wanting to address how I budget for my care and share it with y’all. That will wait a bit longer…this is more important.
If you follow me on the gram - you know I shared a candid post about what someone else in the #hscommunity said to me. And just a reminder, I have #hurleystage3. I am not in remission and I'm currently failing on a leading #biologic but will continue taking it because my body responds really well to it. Oh, and, I am recovering from a recent #excisionsurgery for an #hstract.
Here’s a snapshot in case you need a refresher.
TW - I will be showing wound photos. Disclaimer - I am recounting the conversation had with my physician in this post - it is paraphrased and should not be taken as actionable medical advice. Should you feel a kinship with my story, please seek out the opinion of a licensed medical provider. If you think you have #hidradenitissuppurativa please seek the opinion of a dermatologist with experience treating the disease.
I normally would let this go. Just smile and move on. But I think we need to better discuss this.
Does anyone really ever look like they’re afflicted with something we cannot see? Do we ever really know what someone is battling, silently? The answer - no. I could type out a dozen scenarios, but I think we are all smart enough to know not to judge a book by its cover.
…or so we’re taught…
WOUND TW
If you’ve seen the post and scrolled through the photos, you’ve seen my #excisionwound. You’ve also seen how two of the stitches ripped. My doctor and I both knew it was a 50/50 shot and that I would accept the stitches. It’s why she didn’t put in a running stitch even though she had to remove the #hstract down to the muscle tissue. That’s how far it tunneled. Also yes, I see the ring of red around the area and the little cyst at the bottom. Nothing to be concerned about it's been addressed.
#Excisionsurgery is pretty much a non-event for me. I have had so many in the 2+ decades I’ve lived with #hs that I don’t really get frustrated with them. I have been mentally conditioned to just work around the surgeries to continue living my life. Maybe that’s why another patient said
“You don’t look like you have #hs”
Maybe all they saw was a jovial demeanor, quick wit, and an impeccably styled outfit (if I say so myself, and I do). See below :).
Even still, there are a million different ways that phrase could have been companioned with other words, other questions, or rewritten altogether.
Do I think their words were intentional? Probably not, but maybe, again I don’t know. Sometimes, we may not have the intention behind what we are saying. We may say things without thinking about how they will be received. I know I certainly have in the past and learned to be more cognizant. However, even unintentional words can have a negative impact.
I think what was so influential to me was the environment I was in. I generally have thick skin and let things go, probably a side effect of working in a male-dominated industry. I was in #nyc. At an event, with a bunch of people I don’t know, but they know me…because they’ve stalked my #gram, read my #blog, and reviewed my #patientjourney. This is the same bunch of people that would take photos of me, record my story, (attempt to unsuccessfully) style me, and ask me to recount my story on a full production scale the following day. I was in the same boat as 4 other #hs patients. All are eager and willing to share our patient stories for the betterment of others who are unable to name the disease and advocate for themselves to get a better diagnosis.
My grad school thesis advisor (iykyk) once said something to me about equity and inclusiveness that has stuck with me.
Equity is everyone having a seat at the table. Inclusiveness is everyone being heard fully and unequivocally.
I know where I am today in my #hsjourney because of my access to resources and continuous, progressive care. But resources don’t really mean anything if you don’t do the work, and shit, I have done the work. No matter how many times #hs has pushed me to the ground and rubbed my face in the mud. I got up, I went back to my care team, and started again. Every.single.time. And when I couldn’t do it for myself, my mom did it for me. I am forever grateful for that.
All of us in the #hscommunity are sitting at the same table - too little understanding of this disease, too many inexperienced doctors, and not enough intent for more expansive benefits coverage. We're all sitting at the same table, just in different chairs.
And yes, if I had the chance to have an open conversation with this patient - I would. Because while I’m fairly certain they meant well, I can’t help but wonder if there’s a projection hidden behind those words. One, I’d be more than happy to listen, empathize, and help them move forward.
My stitch line tore all the way down - which is fine - please don’t sound the alarm. I’m good, if I weren’t, James and I would say something. So naturally, I went to see my doctor to address it. And during that appointment, we got caught up on my experience last week at the campaign shoot. I explained to her the comment that was shared and a few others I’ve experienced on the #gram and she was shook.
With an exasperated sigh, she confirmed how I was feeling by saying,
“So Yaz, what are you supposed to look like?”
Dripping with annoyed sarcasm.
We talked about how inappropriate the comment was even if it had good intentions. We talked about how the comment is completely ignorant of the work I’ve done to take care of myself. We talked about the ill-selected wardrobe that was meant to show my underarm scarring and it didn’t. Why, because my doctor’s handiwork along with my commitment to my treatment plan, means my scaring is contained, soft (non-keloid), and not hyper-pigmented. We talked about the success I’ve had going slow and steady on #semaglutide. How obesity has a direct correlation with any inflammatory illness, and how it’s a scientific fact. We talked about how it (#semaglutide) could be such a great companion drug to any treatment plan where the patient was eligible and supported. We talked about the research she’s conducting in her office and how excited she is for new drugs that are coming that could finally push me into #remission.
To be honest - we’d both love to just see me 2x a year for Botox, FBE, and the occasional laser.
We went over the treatment plan to allow my incision to heal from the inside up. Yes, it’s a longer recovery but it’s alright, no one likes the devil’s bathwater July in Atlanta anyways. We’re utilizing a new drug to help the open wound heal while still allowing me the opportunity to return to #weightlifting, #physicaltherapy, and #mvmt in general. We talked about aspirations, not just for me, but also for others with #hs. Our words, and our conversation, were positive and productive. Riddled with care and intention.
Words matter. They can be used to build up or tear down, to heal or to hurt, to celebrate or negate. Maybe you think I’m a bully for putting my experience on blast, maybe you think I could be kinder towards this person and assume the best, but I ask you this - if it were you, and someone with similar health experiences to you said the same thing, can you honestly say that it wouldn’t bother you, even a tiny bit?
I’m probably never going to get a resolution but it's not going to stop me from doing what I do to take care of myself and continue to do my best to bring my story to you with intention and integrity.
With brutal honesty, wrapped in good intentions.
As always, this blog is not medical advice and should not be taken as such. It is me recounting my personal experiences in the hope of destigmatizing the wellness landscape. Should you feel a kinship with any of my words - I implore you to seek out a medical professional to help you.