As I lay in my king sized bed, with a pounding headache thanks to my monthly woman visitor, I figure I'd do a bit of a mind dump if you will... I've had this thought about my meds for awhile so I figure I'd share.
I've been on Cabenuva for about a year now and initially was very excited to not have to take a pill a day, rid of that daily reminder and, let’s face it, pill fatigue is real! While I don't regret having made the switch, as I reflect I've recognized a few key things:
- Now that I don't have a daily reminder, as an entrepreneur, I've recognized I'm pushing myself way more than when I was on daily pills. I'm sure there are a few factors to it but I believe this is one of them.
- I've recognized HIV advocacy, while still a huge importance in my life, I've become a little disconnected from what's happening, events going on and how I show up overall.
- Thinking back on the pill, maybe I hated the reminder it brought because I wasn't fully healed from all that led to this diagnosis!
Regardless of the medication form we are one, how do we still live our lives, where HIV isn't the only thing or the primary thing, but still advocate in a meaningful way? Sometimes I question what area of advocacy my voice matters most in and I've come to realize that while my diagnosis isn't on a pedestal per se, being public with my status is enough!
I often talk about showing up authentically as an advocate and this is no different. Recognizing the gifts and talents that I have, leaning into those while being open about my status is enough, but I digress. We aren’t here to talk about our advocacy efforts per se, but more so to recognize that what I personally often used as an excuse really wasn't as big as I made it out to be.
Pill fatigue is real 100%. I was tired and I'm barely 10 years in, so I can only imagine how others feel, but as I reflected on taking it daily, it really wasn't the reminder of the diagnosis but in fact a reminder of what led to the diagnosis and the stigma that exists around HIV.
What's the balance in life as a regular human being with needs, wants and desires that just so happens to also be a person living with HIV who simply desires to live a normal non-stigmatized life?!
So much of the life of someone living with HIV, while not defined by our medications, that moment of taking our medication can be all the difference in life, love, experiences and mood.
This writing didn't go exactly how I intended but here are my thoughts for all. No matter what your takeaway, I hope that you never forget:
THIS CONDITION DOES NOT DEFINE YOU
YOU HAVE A COMMUNITY THAT LOVES AND SUPPORTS YOU
YOU ARE WORTHY & DESERVING OF ALL YOUR DESIRES
IT'S IMPORTANT TO LISTEN TO YOUR BODY AND PRIORITIZE SELF-CARE
LIVE LIFE HOWEVER YOU DESIRE, BECAUSE IT'S YOUR RIGHT
Thanks for sharing.
I think we all have a relationship with both our diagnosis and our medications and they aren't necessarily the same feelings at any given time.
Thanks for lifting up that showing up as yourself is advocacy! I love that we don't have to shout, show, or prove anything to anyone and just being us is enough.
Hope you feel better and sending much love!
bp
Amen to that friend. So…
Amen to that friend. So often we forget that even the simplicity of it all is enough 💖💖 love you
Your blog was really thought…
Your blog was really thought provoking! Especially where you talk about not pushing yourself when you dont have the daily pill reminder. My relationship with "work" is an ongoing discovery. But i definately resonate with you. Thanks for sharing xxx Maybe we could do a podcast on my channel Aunty Lous Hour about this? DM me if your interested xx
Hey Lou! So glad it didn’t…
Hey Lou! So glad it didn’t feel like rambling lol
I’d love to do a podcast with you! Pretty sure we’re friends on Instagram so I’ll head over there to continue the chat!
Love your “random thoughts”
I’ve thought about switching to cabanuva but I already take daily meds for other things so I figured what’s one more, but I totally understand pill fatigue too, but unless I can get a shot for everything what’s the point lol. I struggle to remember my meds every day. And I love what you said about what it takes to be an advocate, being open is quite enough sometimes, and sometimes I don’t even want to be open, I’ve struggled with believing that I’m enough as I am; not as smart as a lot of people, not as brave as others, and struggling with mental and emotional issues on top. The last few lines were perfect too, I needed this thank you
connected ...
Marissa, I really appreciate you taking the time to get all of this out of your head. I specifically appreciate the part that you talk about feeling a little disconnected. I just want to personally share that I really appreciate watching you on social media as you navigate your work outside of HIV. you are STILL an advocate. you STILL find and build community. you are STILL helping folks. maybe you feel disconnected from the HIV part of it but you are truly an advocate at heart. that aint going no where.