How I manage my mental health alongside chronic illness

Topics mentioned: disability and mental health, depression, medication, anxiety

Author: Seren, 23

About: Seren shares how living with vasculitis and fibromyalgia affects her mental health, and how she looks after herself while managing these conditions.

When I was 19, I developed a rare autoimmune disease called vasculitis.

An autoimmune disease means that instead of the immune system attacking disease and infection, it mistakenly attacks healthy cells. In my case, it was attacking my lungs and causing growths, called pulmonary nodules, to form in my lungs.

This was a traumatic time for me and my loved ones.

Numerous parts of my body were impacted by the disease, as vasculitis involves inflammation of the blood vessels (which are everywhere!). I was often in and out of hospital to undergo a barrage of tests and invasive procedures, which was hard enough to process without the mental illness I’d been living with since childhood.

This illness transformed me from an active university student who walked and sailed and exercised, to an emaciated hospital patient with a malfunctioning body. I couldn’t breathe, and I even remember having to crawl up the stairs once, as I didn’t have the strength to walk.

My depression was ruthless. Constant pain and illness meant I was always focusing on what I could no longer do. I couldn’t breathe, walk, go sailing, or go out for drinks with friends. My ability to make plans evaporated. One moment I could be fine, while the next I could have agonising bowel pains that would send me running to the toilet.

I was in the middle of my degree which frustrated me even more. I’d finally got into the swing of having a social life and enjoying my time there, but now I couldn’t keep up with my friends. Chronic fatigue ran my life when my breathing and crippling pain didn’t.

I was prescribed a medication called prednisone, which can cause insatiable hunger, redistribution of fat cells, difficulty sleeping, and acid reflux. My body ballooned and I spent countless nights struggling to sleep. The stress kept piling on.

I didn’t recognise myself. The things my body could do were now a distant memory. When I looked in the mirror, a stranger stared back. My mental health and self-esteem plummeted to new lows.

But I did come to terms with it all, eventually.

The great thing was that I was constantly surrounded by so much love. Over time, I realised that I could either define myself by what I couldn’t do, or what I could. Even if physical activities were off the table, there were so many other things I could do, like read and write and hang out with friends. Also, who doesn’t love watching Netflix?

As I had low self-esteem to begin with, it was easy for me to be cruel and beat myself up. This fed into my depression and anxiety – I felt useless, worthless, and worried that other people felt the same or were judging my weight gain. I even felt sorry for my boyfriend because I figured that he didn’t sign up for all this extra baggage. (He’s always said this was silly, and we’re still together now!)

It wasn’t easy to overcome these feelings. In fact, it took years of counselling, hard work, and a willingness to feel better.

I taught myself to stop making jokes about myself, to catch negative thought patterns as they were happening and to redirect them.

For example, instead of looking in the mirror and calling myself hideous, I try to remember why my body is the way that it is and come up with something I do like. Rather than call myself useless, I try to focus on the things I do well.

I was recently diagnosed with another condition called fibromyalgia. With the benefit of experience, I have used this diagnosis to make positive changes that will protect my physical and mental health.

I know that stress will cause a flare up of my pain. While I can’t avoid all stress, I can try to avoid scenarios which foster it unnecessarily.

The silver lining of experiencing so many health problems was becoming highly in tune with my body. This means I can focus on what makes me feel good and understand when I need to take a break or go easy on myself.

When I take care of myself, I feel huge benefits for my mental health. For example, when my body is tired and I take a break, I feel a lot happier. If I’m in pain and I focus on something I enjoy, like reading or watching Netflix, I can avoid lapsing into negative thought patterns. By taking control of my situation and making positive choices each day, my mean inner monologue is a lot less shouty!

This November, it will be three years since my diagnosis. It took at least two years for me to accept my incurable condition, but now I feel strong for sticking it out each day.