Motivation Struggles With Chronic Illness

I am exhausted. At first, I thought it was just fatigue towards the tedium and permanence of chronic illness chores, but it’s more than that. I recently learned the term “pill fatigue”, which describes a person who loses motivation to take their meds, usually because they have too many pills or they have to take them too often (or both). I was grateful there was already a phrase out there; grateful to know I wasn’t the only one that was worn out.

I mean, you expect to grow weary around having a chronic illness – it’s never been a fun thing to live with. But I used to have the motivation to make sure I was doing everything I could to ensure the best care possible with my health conditions.

Over the past year, I’ve found myself feeling an increasingly deep burnout towards these chores. I’m just so sick of doing them month after month. My type A personality that used to ensure I got it all done has fallen by the wayside. Unfortunately, a lot of these things aren’t optional, at least not if I want to manage my disease well.

What’s the hardest lupus chore?

My most frequent, and therefore most exasperating, illness-related chore is my medication. Right now, I have to take meds every single day at certain times and I have a biologic injection that I do every other week.

Not only is it a pain to physically remember to take my meds – and take them with me everywhere as I’m often on the go these days – it’s a grueling chore to fill my weekly pill container. I dread it so much, the counting and the sorting, even though it only takes about 15 minutes. Instead of doing it early on my refill day, I find myself putting it off until late at night when I’m finally forced to do it before bedtime.

There are other onerous chores around my medications – checking to make sure I’m refilling them on time, driving to the pharmacy to pick them up, reordering important supplements as needed, and occasionally having to deal with a prior authorization or other insurance issues. I also have to make sure I watch for side effects, such as getting my yearly eye check because I take Plaquenil and it comes with a risk of eye issues.

Why are they so time-consuming?

It takes so much time because there are so many different types of chores. Not all of the things I need to do for my chronic illness, like pacing, may seem like chores to others, but they definitely feel like it to me.

Some more chore examples include: constantly managing my schedule to accommodate tons of medical appointments, drinking enough water, trying to stay up to date with the latest lupus news and research, advocating for myself, listening to my body, eating enough good foods, making time for rest, doing my physical therapy to manage pain, trialing new treatments that are coming out for some of my conditions, and more – I’m not sure I could ever fully list the innumerable chores that are blended into my life because of my chronic illnesses.

Staying up to date with the latest research is often the hardest one to do. It’s not mandatory, like taking my daily pills, but it’s really helpful overall. Especially because a lot of us can’t count on our doctors to do it. Even though my rheumatologist is generally pretty great at it, she doesn’t focus on many of the seemingly smaller issues like dryness with my Sjogren’s.

How do you stay motivated year after year?

I used to do these chores with a sense of satisfaction that I was doing everything within my power to take care of myself and curiosity about how to live my best live with lupus. That was almost 10 years ago. Now, I’m worn down, struggling with pain and depression, and my poor attitude is rather unhelpful.

I feel like doing these things is just SUCH A PAIN to the extent that I’m starting to miss things here and there. Sometimes I miss one of my meds. And then I get mad when I start to experience small flares, which is a natural consequence of missing or delaying medication. I have no one to blame but myself.

One thing I’ve started trying to help with this is incorporating these chores into other parts of my life. Kind of like how my husband uses a standing desk while he works, well, I’m going to try having a phone call while I’m doing some easy physical therapy. In the past, I’ve had my older son help me line up my pill bottles so that we spend time together while I do my weekly refill (this is also a great time to do medication safety lessons). I think combining tasks or including people will help.

Are you struggling with fatigue around part of your routine? Do you have any advice for others?