One of the most unexpectedly and unintentionally painful things anyone has said to me about my illness came from one of my best friends. About a year into being sick – when everything was still a medical mystery – she said, “You were always my role model for wellness, good health and fitness. How did this happen to you?“

I didn’t have an answer. I still don’t. I probably never will.

But the thing that stung is that I realized that I will no longer be anyone’s role model for good health. I now have an illness that is chronic, lifelong, and qualifies as a disability. I am the kind of person that might elicit people to say – ‘oh… she’s been in really poor health for a long time now – poor thing!‘

This illness has changed how others see me and how I see myself. I might someday get over how others see me. But, self-acceptance is so elusive.

This struggle is especially challenging because I have always put so much emphasis on my good health – it was one of my core values. I worked hard for it and I was proud of having it.

Early in my diagnosis, I was hopeful that I’d just breeze through my two rounds of rituximab, go easily into long-term remission, and move on with my amazing life.

As time has gone on, I’ve learned that pemphigus is really difficult to treat. I’ve met other patients and heard about their long, painful struggles. I’ve listened to presentations from numerous specialists about how short our list of treatments is and how recalcitrant symptoms can be.

What I’m hearing is that things are bleak and often hopeless for people with this illness. I’m not sure if this is reality, or just my skewed perception.

Processing Recent Bad News

I’ve also had some recent additional setbacks to my health that reinforce my belief that I’ll never be a healthy, vibrant person again.

• At my last infusion treatment in December, my white blood cells were really out of range. The plan was to follow-up about a month later with another CBC and see how things looked. I had the follow-up test this week, and while the white blood cell count looked better, a bunch of my red blood cell numbers were newly out of range, indicating macrocytosis (when the red blood cells are too large). This is another thing I’m going to have to look into with my rheumatologist. It could be a thyroid issue, an anemia issue, or just a fluke. We shall see.
• When I had the follow-up CBC, my primary care doctor tacked a lipids panel onto the blood draw. It had been a year, and I was due for a routine check. I thought – no big deal. I’ve always had an excellent lipids profile. To my shock and dismay, I went from totally normal to extremely high lipids in just a year. It’s probably mostly the prednisone, or maybe a little that I’m post-menopausal now. Regardless of what caused it, it was a shock. I eat such a careful diet with lots of fiber and low saturated fat. I’m at a healthy weight. I exercise daily. No one in my family has high cholesterol. I feel like this is just another health failure, and I’m incredibly sad about it. I know that probably sounds stupid. People probably think ‘Just take a statin like everyone else does.’ But when everything is going wrong with your health, little things can feel outsized when they keep piling on.
• I have appointments for a metabolic work-up and a DEXA scan in February. I feel such dread over these two things. Prednisone wrecks bone health and also causes high blood sugar – and I’ve been on it for a long time now. What other aspect of good health am I going to lose next? I’ve always had strong bones and healthy blood sugar, due to my healthy diet and consistent exercise. But it doesn’t seem like those things even matter anymore. I’m totally at prednisone’s mercy.
• I had a conversation with my pemphigus specialist. We talked about my progress and when I could expect to see any results from the rituximab infusions. Next Tuesday opens the 6-8 week window of time that the average patient starts to see their symptoms remitting. I’m tapering off prednisone, so I’m really not sure what will happen for me with the rituximab yet. My doctor told me some people take longer to experience symptom improvement, and reminded me that pemphigus is a marathon, not a sprint. She also suggested that I begin mentally preparing that I will need additional rounds of rituximab. Those things are neutral statements, but they still feel like body blows.

So, nothing is easy or certain. It feels like I will continue to lose aspects of my good health, and there’s not a thing I can do to control it.

I know I shouldn’t overthink the future or try to guess what’s going to happen, but my mind wanders and I’m imagining my body covered with sores/blisters, broken hips, statins, and insulin shots.

Is a life with that much chronic illness worth living?

I’m not sure.