The Enduring Hardships of Lupus

Often, my relationship with lupus feels like it’s going to take over my life. It's just too much. I recently read an article that talked about how to maintain your identity within a relationship. I couldn’t help but compare it to my struggle to preserve my own identity while living with lupus.

I feel like I've lost so much of who I am due to this disease. Unfortunately, lupus isn’t as understanding or accommodating as many relationship partners.

Lupus takes up so much space

Have you ever heard the phrase, “I have lupus, but lupus doesn’t have me”? I see it regularly on chronic illness websites and social media pages belonging to advocates. If this phrase empowers you, then that’s great, use it as often as possible! Unfortunately, it doesn’t resonate with me all that much.

I’ve tried to be better than lupus, or more than just lupus, and refuse to let lupus take up too much space in my life. But it hasn’t really worked for me. The reality is that lupus is usually in charge whether I like it or not.

Being realistic

I've tried to take on the mindset that I'm going live a good life no matter what my lupus says, but I still find myself suffering from joint pain and barely able to get out of bed, much less enjoy my day. It helps me to have a more realistic view of life with lupus. Accepting my limitations means I won't be too discouraged when I find myself experiencing that shift where there's less of me and more of my disease.

How do I make room for myself?

Despite my best efforts

As I was reading that article about relationships, I thought about applying some of the tips to my life with lupus. Some recommendations were using mindfulness, going to therapy, and trying not to act on negative feelings when you’re frustrated.

I was frustrated this past weekend when I was only on my third chore of the day and found that my energy zapped right out of my body and left me feeling like a puddle on the couch. My fatigue was bad enough that it was hard to sit up. I was so angry about not getting to achieve what I wanted.

I tried to lean into using mindfulness – thinking about what I could do while my body was at rest, like catching up on reading. I wondered if there were new hobbies I could find that would be easier to do since I'd lost so many of my old ones. I also focused on what I could do to impact my relationship with lupus, such as taking my medications and keeping up with lifestyle choices that help mitigate my symptoms.

But, despite my best efforts, I was still mad.

I wish I could break up with lupus

Angry and tired, I listened to a few of those stereotypical break-up songs that talk about burning everything to the ground. That’s how I feel. I want to take everything associated with my relationship with lupus, light it on fire, and walk away into a new future.

It doesn’t work that way, unfortunately. The nature of lupus is never-ending and this relationship with my disease has created many hardships in my life. It's something I have to figure out how to live with.

I know that I’m in a difficult phase right now and things will probably get better (and then harder, and then better again – rinse and repeat). Every day I keep looking for little ways to be more successful at being independent and letting lupus remain in the backseat for as long as possible.

How do you cope with the enduring hardships of lupus?