Dear Lupus, I Want Myself Back

My personal balance between patient and person has been going in the wrong direction lately. I’ve never felt like the balance was perfect, even though my lupus diagnosis was 6 years ago, but new challenges in my life have made me feel like I’m drifting in rocky and uncertain seas.

The loss of myself and my independence has been weighing me down for years. I’ve leaned on a lot of people for help, but my main support person is my husband. However, he has started to have more times when he is unavailable to be my backup support person and this has sent me into a bit of a spiral.

What do I do when it’s just me?

I have watched my husband grow in his career and celebrated his milestones for almost 10 years now. However, one thing I didn’t fully realize is that he would be pulled away, both by travel and last-minute meetings, as he grew into his new and bigger roles. Last month, there were several days that I thought he would be available as my backup support system, but then suddenly he had to step away.

I felt such panic in the moments when I learned he wouldn’t be available. I plan my hardest days around the times my husband works from home so that he can help me if something comes up. Of course, the day that he was suddenly unavailable turned into a painful, disabling day. I wonder how much of this was my body responding to my internal panic. I was terrified of having to go do preschool pickup for my youngest, bus pickup for my oldest, and be in charge of our afternoon behavioral therapy session. What if I ended up in a situation where I truly couldn't show up for them?

I am terrified of not being able to do it. I'm also scared of having to do it while I’m suffering. I’ve gone through so many appointments and errands with an invisible monster of pain on my back. I struggle with the physical disabilities of my chronic illnesses as well as the anxiety that accompanies my fear of pain and not being able to do things.

This has made me lose parts of myself - the parts that are joyous, spontaneous, humorous, and just plain happy. Sometimes, after a ketamine session (I use ketamine for depression), my husband will remark that he got to see a bit of my lost self emerge for a while. We both miss the me that seems to be squashed beneath my health conditions.

How do I get my independence back?

I am pleading with my body to give me back the core of myself and my independence. I’m begging lupus for a respite from everything it’s put me through lately. And I don’t think my disease is even considering my request.

There are days when my health conditions make my body break down – like a car left stranded in the road with no help in sight. I recently had my first experience with status migrainosus, which is when a migraine attack lasts longer than 72 hours. It was awful. I had to keep taking care of my kids while in pain because my support system had other commitments during most of the almost 5-day-long migraine attack.

I’m already doing everything I can to “beat lupus.” I’m seeing all the doctors, taking all my medications as prescribed, and making lifestyle changes. Yet here I am, wondering how I gain hold of confidence and independence to live my life – something that I used to have (and I took it for granted).

I feel unsafe in my body. Going through so much physical pain and experiencing disabling moments has created a type of trauma that’s hard to explain. I’m tired of not being able to do things. I’m tired of having to do things that I do not feel capable of doing. I feel depleted and backed into a corner by my disease.

How do I find a balance?

My health conditions make me feel like I do not have bodily autonomy; it’s like I’m not in charge anymore. I feel like I don’t own my body or get to make decisions about what it can and cannot do.

Yet, I have meetings, appointments, and events that must happen somehow. I have more obligations than ever and less support than I’m used to. Next month, my husband will be traveling for an 8-day work trip and I’m terrified that the person I rely on so heavily will be on another continent. This is his first big trip since we had kids and there will be trips to come. We’re not in a place to hire more help than the occasional sitter to give me/us a break.

I want to be able to count on myself again. I want to bet on me. I don’t want to be living in fear. I don’t know what the path out of this looks like. I’ve been proactive in seeking treatment for every aspect of my health since my first lupus flare in 2015. I don’t understand why the puzzle pieces are still not falling into place.

Do you feel like you can’t get your lupus or other health conditions under control?