Overwhelmed by Doctor's Appointments

I first started dealing with chronic pain and illness in 2015. Each year since then, I’m determined that this will be the season of my life where I don’t have to constantly go to the doctor. So far, every time I have been wrong.

When I was diagnosed with lupus and hypertension in early 2017, I had all sorts of doctors checking on me as we tried to figure out exactly what was going on. I also was going to twice-weekly physical therapy for my muscle pain.

Just when I thought things were close to being under control, I unexpectedly became pregnant with my first child. While it's not recommended for people with lupus to get pregnant without proper planning, thankfully, things went well for me overall. Of course, I had many, many doctors’ appointments during my pregnancy.

Seemingly endless appointments

It’s always something, isn’t it? Last summer I had 4 Benlysta infusions over 2 months. I’ve been in a physical therapy program 6 different times since my chronic pain journey started. Over the past year, I’ve seen a specialist for eye inflammation issues 14 times, sometimes coming in weekly when I'm flaring. During my second pregnancy, I traveled to Duke University Medical Center 4 times to see specialists. I also needed twice-weekly appointments for my high-risk pregnancy starting at 32 weeks and even had a hospital stay at 36 weeks for monitoring. After delivery, I developed complications and, after 4 appointments, the issues are still not entirely resolved.

Who else can relate to the never-ending and overwhelming issues that cause you to have to keep returning to the doctor?

However, it’s not just me that has a lot of doctors’ appointments anymore. My 3-year old has 3 appointments a week for speech and occupational therapy, plus appointments with specialists to help navigate his medical complexity. We were thrown for another loop when my youngest was born with a rare disease; he had to see a geneticist before he was even 2-weeks-old.

How do you find the time to go to the doctor?

Before I had kids I just made my appointments and went to the doctor. It was hard having so many appointments and feeling unwell, yet I had no idea how much harder it could be. Before COVID-19, I would occasionally take my first child to appointments with me. It was extra work, though, and I’d be exhausted and in pain afterward. But I wasn’t allowed to take him to any of my appointments after COVID-19. Currently, there’s no way I can take both kids with me and still have a productive appointment.

So I have to arrange childcare for nearly all my appointments. I have to figure out when my doctor and my childcare are both available, which is quite difficult at times. The hardest part is sharing just how many appointments I have with my family or babysitters because my poor health isn't something I'm always ready to talk about. Lately, when my doctor recommends an appointment or procedure I ask how important it is – because I have no time to waste on something that’s not absolutely necessary.

I didn't realize it would be so complex to go to appointments as a mom. I thought more issues would be resolved, yet here I am still needing to see doctors all the time. I also didn't expect that my kids would need so many appointments. Sometimes I need childcare for one kid while the other goes for an x-ray, lab work, or an especially in-depth appointment. Don’t even get me started on the extra work of insurance approvals, filling medications, or messaging doctors about follow-up issues and care.

As hard as it is, I wonder how people who work full-time could manage it? At this point, I couldn’t go back to work full-time even if I was physically able to because I spend so much time each week on my care and my 3-year-old’s therapies.

Attempting to have a positive perspective

Yes, I’m sick of going to see doctors all the time. But I’m grateful for my insurance, for my supportive spouse, for excellent doctors, and my support system that provides so much help and childcare.

I’m eagerly waiting for the day when I have fewer appointments. At the moment, my body clearly has other plans. I will have to adjust and make the best of it - as many of us with lupus have learned to do.

What are your experiences with going to the doctor as a parent?