Do you ever catch yourself questioning your condition? Maybe I don't need medication anymore. Maybe I am just tired. Maybe I overdid it. Maybe my medication is actually working, and I am just whining.
I do it all the time without even realizing it.
I go to the doctor for a checkup, and she says do you think drug xyz is working. I answer no, I really don't. My Psoriasis is slowly starting to flare, I am tired, and my ankles have been swelling. Well, your Psoriasis has definitely been worse. You are right, but it's starting to appear in new places, which is never a good sign. That and fatigue have been my warning signs for a failing treatment. She did not intend to make me doubt myself or convince me to stay on a medication that wasn't working. She has been my biggest advocate in finding the right treatment for me and pivoting as quickly as we can, but still, that's where my mind went FOR WEEKs.
Recently, a friend asked me if I had started my new medication yet, and I said no, I am still waiting on insurance. She said oh no, you must feel awful. How are you? My response was oh no, I am totally fine. She was like, really? I'm like, yeah. But seconds later, as my brain really processed what I just said, I was like, well, I mean, my ankles were swollen for three days, and it has hurt to type lately, and I am exhausted. So, I guess I am not doing too hot.
Fast forward a week, and I am in the kitchen thinking to myself, maybe that medication I just stopped was working. My Psoriasis isn't that bad; it has definitely been worse. Maybe I don't need medication anymore; I basically feel the same without medication as I did with them lately. Maybe I am just exhausted because there is a lot going on.
Looking back on all of these scenarios over the last month, rational me says really, Brittany? Of course, you aren't 100%. News flash: not being able to open water bottles is not normal. You know your body. You know your disease(s). You know you need a treatment that works. Not only can you feel better, but not being on an effective treatment means MORE DAMAGE will occur.
Do I have solutions for you on how to not trick yourself into thinking you are fine? Absolutely not. But I have a great community around me at AiArthritis where I get a nice gut check from my fellow Ai patients and validation of where I am at any given moment. I have never had that kind of community. My only resources growing up were my family, friends, and doctors, and none of them really got it. I tried some support groups and NPF programs in college, but nothing clicked. There was a lot of complaining or required a lot of process I didn't care for at the stage of my life. Even now, I need flexibility. Having a positive but realistic community that is there WHEN YOU NEED IT in multiple formats is fantastic. Outside of AiArthritis, I have found a similar community at work with others with chronic diseases and even with the pharmaceutical company nurse ambassadors they provide. Heck even sharing my blog on LinkedIn has started a small community there. These outlets are necessary for me to understand reality and if I am making a big deal out of nothing.
Now you must be thinking, thanks for nothing Brittany. So, here are some quick tips:
Listen to yourself
If you need reminders of reality, keep a symptom tracker for a few days or a week so you can SEE where you are at
Find a thought leader that empowers you. Brene Brown is my go to.
Find your community. If you don't have one, reach out to me.
Check out the resources that have helped me:
I would love to hear about resources that have helped you. Please share in the comments!
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