Loneliness is a big problem in the UK. So much so, the government saw fit to appoint a loneliness minister!

People often think that being lonely means you’re all by yourself. The truth is, you can be in a room full of people and still feel lonely. Loneliness isn’t just about physical isolation; it’s about the need for real connections with other people. These connections help us feel supported, accepted, and understood, especially when we want to talk about things that make us feel a bit vulnerable.

Distancing myself

In 2007, I was diagnosed with ulcerative colitis. A week later, I had to have a stoma. Over the next twelve years, I went through seven surgeries, and most of the time, I felt unwell. During this time, I lost a lot of friendships. Well, “lost” might not be the right word because it sounds like I misplaced them. In reality, I made choices to distance myself from people. This was mainly because I felt like I couldn’t be completely honest with them, or because they got tired of asking how I was doing when I never seemed to “get better”. These people made me feel alone. They made me think I had to pretend that everything was fine all the time. I don’t think it’s my responsibility to hide the truth just to make others feel comfortable, especially when those people are supposed to be friends.

I also made new friends during this time, so it wasn’t all doom and gloom.

Guilt in chronic illness

When you have ongoing health issues, it can lead to a lot of guilt. This guilt comes from things like cancelling plans, saying no to activities, or being the person people have to adjust their plans for. It never nice to feel like you’re the complainer of the group, either. Everyone else is talking about the things they’ve been doing, but all you’ve been doing is trying to get better.  

I asked people in the online inflammatory bowel disease (IBD) and ostomy community if they ever felt alone because of their health. Many said they had. I noticed many of them chose to send me private messages instead of commenting on my public posts. Sometimes this was because they felt their health issues were private, and sometimes it was simply that didn’t feel comfortable admitting it publicly because of the stigma they felt attached to “loneliness”.

For many people with ostomies, feeling isolated happens because of a lack of understanding. Some people have this idea that having an ostomy bag is something only older people have, or that it’s smelly or gross. This can make it really hard to talk about. But talking to other people with ostomies, whether online or at local meetups, helps them feel less alone.

My personal experiences with isolation

I’ve felt isolated and alone on more than one occasion. The first time was after my diagnosis and recovery from stoma surgery. I wasn’t physically alone. I went to work and for a drink after work every Friday with my workmates. But none of those people ever asked about the few months I had taken off work, or about my stoma, or the disease that led to it. I knew they were aware of it because, at work, if one person knew something, soon enough, everyone knew. I still don’t know if they didn’t ask because they didn’t care, they didn’t know what to say, or whether they thought I didn’t want to talk about it. None of those friendships lasted beyond my leaving that job, so maybe it was a mix of those things.

I had a Jpouch created in 2008, which was connected in 2009. For a little while, I got some of my life back, but then chronic pouchitis became a problem. The second time I felt isolated was when I was in a lot of pain, going to work every day just to pay the bills. On Fridays, I’d join my mum at the pub for a few hours. But I got more and more frustrated and angry because it seemed like no one understood how sick I really was. People would make careless remarks like “Why come to the pub if you’re only going to drink orange juice?” or “You can’t be that sick if you’re going to work.” But the truth was, I couldn’t drink alcohol because I had to take a lot of pain medicine just to go to work. Those few hours at the pub with my mum were my only chance to socialise all week! I didn’t want to have to explain all of this to people, especially when they had already made up their minds about me.

Finding my tribe

During this time, I was working in social media, which I used to vent my frustrations and raise awareness about inflammatory bowel disease.

All of a sudden, I wasn’t isolated anymore! I found a group of people who understood how I felt. It didn’t matter that they weren’t right there with me because I knew they were just a message away on my phone, always in my pocket. When I had a stoma for the second time, due to an abscess and twisted intestine, they were an amazing support network. Then I went back to having a J-pouch after five months with a stoma.

The third time I felt isolated was during a very long flare. I had chronic fatigue and started suffering from depression. I stopped talking to people, both in real life and online because I didn’t have the energy, and I didn’t feel like I could offer the support and positivity others needed. It was a really long 18 months, and I missed my online friends a lot. My depression only started to go away when I had surgery to form a permanent stoma. Being pain-free was fantastic, and I started to feel more energetic as I recovered. So, in this case, my stoma was like my knight in shining armour, saving me from a pit of despair and loneliness. Maybe I should make it a foil hat!

Reaching out

We’re all different. There’s a process most people go through, kind of like the stages of grief, before they can talk openly about their experiences. Many other things can affect how open someone feels, like the people around them, how long they’ve been unwell, or simply their personality. Sometimes it just takes time, other times it takes finding the right people to open up to, and sometimes it might take professional help.

It can be hard to take that first step and to reach out, whether it’s to family, friends, a community of people with the same disease, or a professional. But, if you’re feeling lonely, I would urge you to do so. You don’t have to make feeling alone your normal.