Would You Rather …?
“Would you rather?” is a popular game where an individual is asked to choose between two options and often asked to explain the reason behind their answer. For example, “Would you rather win an Olympic gold medal or an Academy Award?” It’s a great icebreaker and conversation starter. The questions can be almost anything from serious to naughty and can be played in a wide variety of circumstances.
“Would you rather?” and RA?
I recently played “Would you rather?” with my RA.
Let me explain.
I have been off methotrexate since the end of July. I was doing the injectable form rather than the oral tablets. As I was going to be traveling, I didn’t want to carry syringes and vials across international borders, so I opted to just miss a couple of doses while I was gone. Then the strangest thing happened. I realized that I actually felt better NOT taking methotrexate.
Like many people when they’re first diagnosed with RA, I was prescribed oral methotrexate. The side effects I experienced, including fatigue and brain fog, were just awful. It certainly doesn’t affect everyone this way, but I would take my methotrexate on a Friday evening and it would usually be Saturday afternoon before I could get out of bed or feel like I was thinking straight. I had to stop methotrexate to get ready for some surgery and then I refused to go back on. (This started my journey with biologics.)
Fast forward about eight years and my rheumatologist once again suggested adding methotrexate to my treatment plan. Rather than the oral pills, she suggested the injected form and, interestingly I didn’t have any noticeable side effects.
I say noticeable because when I stopped taking it, the “feeling better” effect I had was less fatigue as a result of stopping the methotrexate. The fatigue had built up gradually over the months and I hadn’t realized how tired I always felt. Without methotrexate, I actually felt more like getting up/out and doing more things than I did when I was on it. I talked to my rheumatologist and my labs looked good, so I’ve stayed off methotrexate since then. (Note that I would never, ever suggest changing your treatment plan without discussing with your doctor first.)
This is where the “Would you rather?” game comes in.
Even though I’ve continued to have less fatigue and overall felt “better”, I have noticed increased morning stiffness and some additional aches and pains I didn’t have before stopping methotrexate. So my “Would you rather” options come down to choices between (1) feeling more vibrant with no methotrexate but with some additional pain (and potentially more joint damage) vs. (2) feeling fatigued. So far I’ve opted for feeling better and less fatigued. As long as the stiffness and pain levels remain where they are, I will continue to do so.
There is good news and bad news in all of this.
Chronic illness and hard choices
The bad news is that chronic diseases such as RA often come with really hard choices. While the game of “Would you rather?” can be sometimes awkward or even embarrassing, unfortunately, real-life decisions have real-life consequences. Often the outcomes of your decisions can’t be accurately predicted – such as the effectiveness of treatment plans. Making decisions without having confidence in the results is difficult and stressful.
The good news? The good news is that life isn’t a game. You aren’t limited to only two choices and, beyond that, you can change your mind. For example, I can go back on methotrexate or even add in a different option by talking with my rheumatologist about a different treatment plan. I am in no way limited to the choices I’m looking at today.
The other good news is that while the game of “Would you rather?” doesn’t come with any lifelines, RA does. You can surround yourself with a team of healthcare professionals, experienced advocates, and other patients, and supportive family and friends to help you work through the option and choose the right ones for you.