Lupus and Letting Go of Anger

Back in February this year, my whole world seemed to change overnight thanks to my systemic lupus erythematosus. Within a week I had left my job, relationship, flat, and the city that I had called home for nearly 6 years.

I had been trialling various medications that hadn’t worked for me since my sudden diagnosis in 2020, and my lupus had continued to worsen rapidly. At the end of 2023, the only option was to try a new medication that would take around 6 months to kick in, meaning my health would regress before it improved. After spending the last 4 years just pushing on through, I made the difficult decision with my family to move back home to try and manage my condition.

Yet, the main emotion I had when waking up in my childhood bedroom, instead of relief or comfort, was anger. I was so frustrated that lupus had taken so much away from me. I was always someone who would pride myself on staying productive, having a busy social life, and just generally doing anything to keep busy. Suddenly, I found myself physically unable to do the things that brought me joy. Instead of my usual activities, I was bound to the sofa due to pain and fatigue. It felt as if my body had breathed a sigh of relief when I moved home, finally being able to experience all of the symptoms I had been ignoring day after day during my early twenties.

As with any difficult health condition or disease, anger is easy to feel, but will get you nowhere. I wasn’t angry with the condition itself, but at the fact I would finally have to learn to live with it. Trying to battle through severe lupus, rheumatoid arthritis, anxiety, and depression without ever managing them feels like constantly running into a dead end. After years of living with these conditions, I had never truly thought about what I could personally change about my life to improve my health and overall well being.

Ultimately, I believe that is why I finally decided to leave my busy life behind. I was sick of just being angry at my body for failing me, at the medical system for not having the resources to improve my health, and at people for not being understanding towards what I was going through. Before these last 12 months I would have said I was far from an angry person, yet It felt like the emotion was overwhelming my thoughts and seeping into every aspect of my daily life. People around me knew me for being positive, and it feels like my lupus had taken that away from me too. Nevertheless, being angry at my body wasn’t going to help, but I knew looking after it could. So this year, it was time to stop pushing all my emotions away and do something about it.

For the next few months, I simply looked after myself. I spent the majority of my time lying down, as it was the best way to manage the agonising joint and muscle pain if they were all relaxed. I made sure I ate 3 meals a day, even when my medication made me feel like I couldn’t. I re-watched old comfort shows which meant I didn’t have to fight my brain fog or fatigue by trying to follow new things. I cut down on my drinking, even though most days I wanted to drown my sorrows with a bottle of wine. When I occasionally did see people and brave the town centre, I made sure to factor in plenty of time before and after to recover. When I tried to go for a walk around the block or stretch to get some small amount of exercise, I stopped when I experienced serious pain rather than pushing through. Finally, when I got bored out of my mind and depressed that this was what my mid-twenties had become, I simply allowed myself to feel all of it, however painful it was.

It has now been 6 months of this, and I no longer feel angry. Things are slowly starting to fall into place, medically and every minor improvements feels like a gift. I have been to the gym for the first time in nearly a year. I can have a day filled with activity and even think about doing it again the next day. I don’t always feel crippling pain when I walk for longer than 20 minutes. I get to spend longer with my friends. I don’t feel embarrassed to tell new people about my illness. I’m getting back into my script writing, an opportunity I’ve been searching for since I left school. I’m getting ready to return to the workplace, even if only part-time. I mainly watch documentaries and crime thrillers to make the most of when my brain is working (and watch New Girl for the 15th time when it’s not).

Don’t get me wrong, my life is far from where I thought it would be a few years ago, and far from where I would like it to be. I still get upset and have days where I struggle with my mental health because of it, but I now know that it is okay, and I hope that anyone going through something similar is able to learn this too. I may have a long way to go in my lupus journey, but at least I have made life a bit easier for myself by letting go of the anger.