Thank you to everyone that reached out on my Gaslight post. I got so many messages from people that had similar stories. It was so frustrating and heartbreaking, honestly. It’s a theme, especially for women.
When it comes to chronic diseases, women especially are labeled as problematic. We’re “hysterical”, right? It’s depression. It’s in our heads. It’s anxiety. We’re hypochondriacs. I wish I could say that the gaslighting I got from doctors was from all men but there were a fair amount of female doctors that did it to me as well. So is it misogyny? Probably. Is it the healthcare system where we have 15 minutes tops to talk to a doctor (if we are lucky to see a doctor) and they don’t look at our history or really listen to us? Most definitely.
I’ve found some podcasts recently that have REALLY helped me. One in particular is great: Arthritis Life. She interviews people and shares stories and experiences and tips. It’s been so helpful listening to other people’s stories about how they got diagnosed (spoiler alert: most of them it took years, if not decades for a diagnosis…with LOTS of gaslighting by doctors). She has Rheumatoid Arthritis (which is similar to PsA in that it is an inflammatory arthritis, not like “I’m 70 years old and experience bone on bone arthritis”). I found some other specific to PsA podcasts that are more medical in nature and have been helpful to explain the ins and outs of what the disease actually is.
I was talking to Michael recently about how I got the diagnosis a year ago and yet, I did nothing about it. It’s so not in my nature. I am a researcher. I jump right in. So why did I shrug it off? I finally had answers, I finally had a diagnosis that I needed for over a decade, and yet I did no real research, I still didn’t know anything about psoriatic arthritis or axial spondylarthritis (arthritis in my spine–which explained all my back and SI and hip problems!)
I was in denial, I guess. He pointed out that I had a lot going in my life–postpartum, Logan starting school, baby, breastfeeding, going back to work, health issues, chronic pain etc etc. It’s still weird for me to just drop the ball and not follow-up.
I think I was also just not ready to deal with it. I think the idea of more medications freaked me out. Especially the type of medications. It can be really overwhelming. If you’ve seen the commercials for these drugs (they are EVERYWHERE- Cosentyx, Humira, Rinvoq!) the side effects are daunting. But I came to realize, that with a progressive disease it’s important to slow that degeneration down. It’s important to weigh the pros and cons and think about quality of life. And your future.
It’s common for inflammatory diseases to clear up when you are pregnant, and unfortunately go completely bananas postpartum. That happened to me with both kiddos. I felt like my body was completely broken after Zoey. And then it was like, is this just my new norm? Did having her literally break me? Then things started to get a little bit better–then I got covid in April of this year and about a month later I had a horrible flare up to the point where I could barely walk. I realize now that that was a flare of PsA. That’s when it was time to do meds.
All that to say, it’s ok to be in denial. Getting a diagnosis (finally) comes with a lot of emotions. RELIEF. Finally, answers!! DENIAL. That can’t be my life forever and ever. ANGER. Why is this happening to me? Why did it take so long to get answers? SADNESS. What does my future look like? BARGAINING. Maybe if I do X diet I can fix this? HOPELESSNESS. This will never get better. ACCEPTANCE? We’ll see.