Lupus Time isn't self-care time!
post in honor of international self-care day 2021.
My whole life changed the day my rheumatologist shifted from trying to recruit me into rheumatology to telling me that my body could no longer both survive lupus and complete med school. While the six-month diagnostic process of hospital stays and doctors’ visits was traumatic at sixteen years old, we were able to get the lupus under control. I continued on with life without genuinely recognizing the ticking time bomb inside me. My entire relationship with lupus changed when I had a massive flare in medical school.
I could not work or engage in much social activity, and my whole life felt like it had run off the rails. Feeling lost and alone, I found a community of fellow warriors through blogging and Twitter. These friends helped me see that helping my body survive this disease and prioritizing my mental health aren’t selfish acts.
When people think about lupus, they understandably hone in on physical symptoms. However, I think it’s equally important to consider the impact of living with a chronic illness on mental health. Both take up a lot of time and energy. That’s why I started to prioritize self-care that isn’t focused on my disease. I do a self-care Sunday post every week on my Instagram page because I think sometimes we all need to be reminded to prioritize ourselves.
Here are some things that I think it’s important to remember:
1. Caring for yourself due to your lupus and self-care are two different things.
Lupus takes up a lot of time in doctors’ visits, high fatigue days, and even filling med cases. So, it can be hard to carve out additional time for self-care, but it’s essential to set aside some time that is about you taking care of yourself, apart from your lupus.
2. Self-care be whatever you want it to be.
What do you think of when you hear “self-care”? People often tell me that they immediately go to the classic: drinking a glass of wine in a bubble bath. Which sounds great, but it doesn’t have to be the go-to play. For me, sometimes, time in nature with my dog Ollie is my self-care. Often, it’s sitting down with a book and a mug of tea with my phone on Do Not Disturb mode. For others, it’s baking or gaming. Do you!
3. You don’t need to justify your self-care time.
Our relationships are an understandable draw on our time, but people who love you should recognize and respect that you need time for yourself too. Hopefully, they have their self-care activities too.
4. Self-care can look different than you planned.
Let’s face it: our bodies often have little respect for the plans that we make. Sometimes, I’ll plan a self-care walk, but my lupus says no. So, I’ll sit in the park with a book or find a different version of self-care that day. Living with a chronic illness like lupus involves a lot of rolling with the punches, but that doesn’t need to mean that self-care has to take a hit.
5. Self-care is NOT selfish!
My lupus eats up so much of my time already that I often struggle to remember that I’m entitled to self-care time regardless of how much time lupus took from me that day or week. That’s why I appreciate having a dedicated self-care Sunday reminder.