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What I wish people knew about living with both a chronic illness and a mental illness

My mental health issues started when I was young. When I was four years old, I experienced seeing things that were not there, and hearing voices. At the time, for reasons unknown; and my teens were filled with mood swings. I was later diagnosed with bipolar disorder, borderline personality disorder, and obsessive-compulsive disorder. I also live with a chronic illness called ulcerative colitis; a form of inflammatory bowel disease that causes inflammation of the colon and rectum.

Symptoms started when I was 17. I lost an excessive amount of weight very fast, experienced rectal bleeding and chronic constipation and stomach aches. I went to the doctor multiple times, and each time I wasn’t believed. I was told it was just periods, women’s troubles, there couldn’t be anything really wrong. They were wrong.

In 2015, when I was 19, I deteriorated in a very short space of time, until the point where I ended up in the hospital. After a week in hospital, I underwent an emergency operation to have the entirety of my colon removed. It had perforated and was so heavily diseased that I was told had we waited any longer, I would be dead. I was given a stoma bag.

As you can imagine, this was difficult and traumatising. I had never seen a stoma bag before, nor did I even know what one was. But there I was laying in a hospital bed with a stoma staring right at me every time I looked down.

Photo by Jonathan Borba on Unsplash

I went weeks unable to look at it. My mum would change the bag for me because I couldn’t bear to. But I knew I had to do it if I was to get on with my life. It was a big step, but I remember the first time I changed my bag being a huge relief. It wasn’t as bad as I’d thought, and it was easier to do than I’d imagined.

My family were a huge support and helped me to get through the initial weeks. My mental health was a mess. I felt lost and confused and unfamiliar with my new body. It was a lot to get used to and to come to terms with.

But with the support of my family, I got through it. And actually, having a stoma bag was a blessing. I no longer dealt with stomach aches or the pain of chronic constipation and bleeding. I felt fit and healthy and physically comfortable for the first time in years. It felt freeing. I was able to do whatever I wanted when I wanted. I could wear what I wanted without worrying about huge bloating and pain from tight clothes.

I think there are a lot of scary stories on the internet, and that’s because generally, people only talk about the negative things online because they’re looking for help and support. The people whose stoma bags have been a blessing to them are out there living their best lives — and I was one of them.

I decided though, to have the stoma bag reversed 10 months later — I had initially been told it would be reversed after four, but I didn’t want to have the surgery too soon. Life for me was good. I was scared for it to change.

The reversal was the biggest mistake I’ve made. I went into the operation feeling nervous but ready, having been told things would be ‘normal’ again. But my life is far from normal. I may have a bagless stomach now, but the pain is there, and I am now mainly housebound because I need to use the toilet so often. It is isolating and lonely and I look back and wonder why I even went forward with the surgery — like I was to know.

This, accompanied by my mental health issues, has been difficult to live with. It’s a vicious cycle and I feel they play off on one another. If it’s not one it’s the other — I can feel like I’m in remission with my chronic illness, but suddenly my mental illness will come into play; and vice versa. My mental health issues can also cause me to flare up.

Photo by Anthony Tran on Unsplash

Stress has a huge effect on the gut, and when I am dealing with a manic or depressive episode, I will experience huge side effects gut-wise. It can lead me to being in the hospital, due to the amount of fluid I lose and the amount I bleed.

This, in turn, causes greater mental health issues, because going through this for an extended period of time leads me to feel even lower, more anxious and more stressed.

It’s a never-ending battle and you never know which is going to win: mental illness or chronic illness.

Living with a chronic illness can be debilitating, both physically and mentally. But so can mental illness. Sometimes I think they’re one and the same, just in different areas of the body.

I wish people understood how badly chronic illness can affect your mental health. But I also wish people realise what a drastic effect mental illness can have on your physical health.

Neither are things to minimise, they can both push you to the point where you simply do not want to be here any more. These are feelings I have experienced.

I recently wrote about suicidal ideation in my last column for Inspire the Mind. I have experienced this when I have been flaring with my chronic illness. That’s how much it can hurt.

If you have someone in your life with either a chronic or a mental illness, please try to be understanding and supportive. It can be a really lonely and isolating place mentally, and negative comments — such as “you’re just being lazy”, or, “you’re being selfish”, when we have to cancel plans due to pain or mental health issues — that place blame on ourselves do not help.

Check in with your chronic illness friends, reach out to those who are struggling with mental illness. A simple text to say ‘I hope you’re feeling okay’, goes a really long way.


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