What I Find Most Frustrating About Lupus

Have you ever experienced panic because you took a list of flare symptoms to your doctor and they didn't respond with any kind of treatment plan?

I feel a unique kind of fear when I realize that a doctor is not going to treat my pain or symptoms. I wonder, how will I get through this flare? Will I have any quality of life with this disease if my doctor isn’t willing to offer me adequate treatment options?

The most frustrating thing about managing my lupus is the fact that it's not really up to me. While I can change my diet, avoid the sun and other flare triggers, and prioritize rest in my life, I cannot control my disease. I cannot write my own prescriptions. I also cannot change my doctor’s or my insurance company’s decisions about what kind of treatment I’m allowed to receive to manage my disease.

Lupus impacts every single aspect of my life and yet I can't control what happens next to bring my symptoms to heel. So, if my doctor won’t help, I start to feel very stuck and alarmed.

It is an all too common problem

Unfortunately, this is not a new frustration for me. I experienced it at my first visit with a rheumatologist when he recommended I take an antidepressant to treat my swollen, aching joints. Five years have passed since that visit, and I’m still hearing the same advice from doctors – despite having tried and failed several antidepressants at this point.

However, I feel more frustrated today than I did back then because I know that it is almost certainly an autoimmune flare causing my issues, and yet I recently walked out of a specialist's office full of despair as I had zero new plans to treat my ever-worsening symptoms.

In my first pregnancy, my rheumatologist refused to give me a steroid pack for a lupus flare, even after speaking to my maternal-fetal doctor on the phone to address his safety concerns. In the end, I had to ask my obstetrician to provide me with one. While the OB did help me, he was also confused about why I wasn’t receiving proper treatment from my rheumatologist. So was I.

What I can do to overcome frustration

When I’m met with a doctor who seems content to let me suffer from out-of-control symptoms, sometimes it seems like the only thing I can do is change doctors. I have done this several times and, for the past 3 years, I’ve had overall good experiences with my rheumatologists.

Of course, having a rheumatologist who is willing to try new treatments doesn’t mean they will work. While I was able to try Benlysta, I started to experience severe depression as a side effect and had to end the treatment. I discovered recently that a drug that seemed to be working just fine for me for years was causing liver toxicity, so I’ve had to reduce it and start looking for a replacement.

I can also add more doctors to my team that can help with other issues from lupus. I’ve found a great physiatrist, eye doctor, and pregnancy team to help me navigate other areas of lupus alongside my rheumatologist. Some people with lupus may need to add a nephrologist, cardiologist, or hematologist to their team to help keep their disease well-controlled.

What my next step will be?

I’m not sure what my next step is, since I have to largely put it in the hands of my doctors and insurance. But I do know that I will not be returning to see the doctor who made me feel abandoned by not offering me any options. Feeling neglected and anxious because of this doctor, who I trusted, is not something I need to experience again.

Instead, I’ll stick with those that show more compassion and will help me work towards reducing my symptoms. I’ll focus on doing everything I can lifestyle-wise to keep things from getting worse and advocate for myself when I need things that are beyond my control. I’ll try not to let the frustration take hold because stress isn’t good for anyone and it certainly doesn’t help with lupus. And, when I have a good doctor that is taking action, I’ll try to be patient as we sort things out.