2 Mindsets That Helped Me After My Lupus Diagnosis
The day I was diagnosed with lupus came 15 months after my first massive lupus flare. I had gotten progressively sicker with each month that passed without a diagnosis or treatment. So, while I was scared, I was also ready to embrace my diagnosis with open arms. It gave me hope that things would get better.
I’ve previously written about 3 big struggles I faced after my lupus diagnosis: overwhelming information, fear, and cost of treatment. Thankfully, there were 2 things that I didn't struggle with. These are the 2 mindsets I embraced at the time of diagnosis that have helped me in my lupus journey.
I accepted my lupus diagnosis immediately and fully
I had known that something was wrong was my body for a while. It’s not normal for a 26-year-old to have hugely swollen fingers, arthritic joints, sharp pain in their ribs that makes it hard to breathe (pleurisy), or fatigue that keeps them in bed for months.
Lupus was my explanation for all of it. I still felt a bit confused about why and how I got lupus, especially since no one in my family has an autoimmune disease. Nonetheless, I accepted my diagnosis as a fact – albeit a hard one – that would give me the direction I needed to improve my health.
I’m grateful that I was ready to accept my lupus diagnosis. I’ve read stories from others with lupus that talk about how they didn’t want to or couldn’t accept it. It’s not uncommon for people to rail against their lupus and end up in a worse place because of it.
Sarah Gorman, the author of Despite Lupus, who was also diagnosed at 26, has talked at length about how she wanted to beat lupus and keep living life at full throttle. Years later, when she finally acknowledged the difficulties it imposed on her life and slowed down, there was a remarkable change in her health.
Lupus can do a lot of harm in a short time, which is why I encourage you to do everything you can to come to a place of understanding with your diagnosis. The earlier you can start treatment, the better off you will be overall.
I complied with all my lupus treatments to the best of my ability
Because I was accepting of my diagnosis, I was also willing to do what was necessary to treat it. I was scared of taking certain medications and I considered them with great caution. But once we decided on a course of treatment I stuck to it – unless side effects made it impossible or unsafe.
Many people miss doses of their medications – either from forgetfulness or unwillingness to take them. In fact, so many lupus patients don’t take their hydroxychloroquine (HCQ) regularly that doctors have started testing HCQ blood levels to evaluate compliance.1,2 Taking HCQ has helped many people with lupus immensely, prevented harsh flare-ups, and kept them from having to take stronger meds.
If you struggle with forgetfulness, you can try using a good pill organizer, timers for meds (there are lots of apps available for reminding you to take your meds), or implementing a routine. I take most of my medications with meals, which makes it easier to do automatically.
I feel fortunate that I was ready to treat my lupus and in a position to do so; that might not have been the case just a few years earlier. I went to all my appointments, got my lab work done, filled my scripts on time, stayed in communication with my doctor about any issues, and followed lifestyle changes as best I could (even though I still hate sunscreen).
Three and a half years after diagnosis
While I’m far from where I want to be health-wise, I still have a mindset of acceptance and compliance. Some days it’s harder to accept than others, but I’m certain that this approach has helped me from suffering more setbacks with my lupus.
Are there any ways that you’re trying to improve your mindset towards lupus?
Who do you turn to first for emotional support? (choose up to three)