Blog Written By a Young Person

A lot of us will experience social challenges throughout our lifetime, the pandemic has definitely highlighted this. A lot of the social challenges I faced growing up, and still continue to face in my 20s, are down to being chronically ill. I started experiencing chronic pain and fatigue, among other symptoms, at the age of thirteen.

Socially, this is an important time in our lives as it is the start of our teenage years. While many kids my age were hanging out most days after school and making plans to go out on the weekend, I was too physically and mentally exhausted to join in. I also missed a lot of school which isolated me further from my peers.

People didn’t understand why I couldn’t go out and do things or why I’d seem fine and then suddenly disappear from school for a few days. This caused further strain between myself and the kids I once called my friends. By the age of 15/16 my social life was nonexistent and my mental health was suffering. 

I thought I was alone for a long time until one day I went online in my late teens and found others who like me, were young people who were experiencing physical health conditions the same or similar to mine as well as mental health conditions which often come hand in hand with chronic illnesses due to the lack of understanding and support.

I had finally found people who I could talk to about my experiences who were also socially isolated and finding it difficult to maintain relationships. I befriended a few of these people online and they became really good friends who I could talk to anything about and we also had other stuff in common too, our relationships were not solely based on our mutual struggles.

It was nice to be able to socialise with others my own age and confide in each other and talk about the things we enjoyed and bond over our experiences. People may say they are “just internet friends” but online friendships can be important and they were the truest friends I had in my teenage years. They kept me from becoming cut off from the world. 

The internet can be a great place to make friends and overcome social challenges but please remember to be safe online, don’t give out any personal information and if you plan to meet your online friend in person do not meet them alone. I recommend having a family member or friend go with you or waiting nearby or if you’re an adult just make sure people know where you are going and what time and who you are meeting and make sure to meet them in a busy location. I met up with one internet friend and it went well but I made sure I followed all the general safety advice and I never went to an isolated area with my friend.

Growing up with these chronic illnesses made me feel like I needed to hide how I felt and pretend to be healthy and happy. Everyday when I interacted with people it felt like I was playing the role of the person I was supposed to be. The Katie who never got ill and lived a “normal” life. As I began to read more about other people’s experiences I began to realise that I wasn’t alone and that I didn’t need to pretend to be something I was not or hide my disabilities to fit in. I started positively thinking about my body and accepted my limitations.

Eventually, after years building up my confidence and making friends online with similar experiences I noticed how much of a gap there was in my own local community. I knew I wasn’t alone, at this point I had been making chronic illness blog posts for a couple of years and received thousands of comments from strangers telling me they thought they were the only ones who experienced these issues and were the only ones who felt isolated and alone because of their chronic illnesses. Most of these people were under 30.

I had been trying to seek social support for years with no luck as there wasn’t anything suitable for a young person with health issues, that anyone involved in my care and support was aware of. After telling a support worker about my blog and all the people I have interacted with online and how many young people, usually with chronic and mental health issues, have opened up about their loneliness and isolation and lack of in person support the support worker then decided to put in touch with SCVS who had been thinking of co-producing a group for young people with the help of young people.

I helped to design this group and got to discuss my ideas and what support I thought was needed. Our main focus was on what was missing, and that was social support. Then at the end of 2018 our social wellbeing group for aged 16 – 30 was born.

I made some amazing friends in this group, friends who understood my issues even if their experiences were different. All of us had experienced some form of social isolation in young adulthood and for the first time I felt like all my social needs were being met.

Through this group I was put in touch with platfform and trained to be a peer mentor which was a course I loved doing and I was lucky enough that platform had made this accessible for me to do online during the pandemic. I also attending different online social groups with platfform which was great help during lockdown but made me realise that online social groups like this would be good for someone with my health issues and limitations as you’re still getting social interaction even if you can’t leave your house.

Thanks to the time I spent in positive online spaces, and the social groups I’ve been involved in, I am now more confident within myself and I don’t feel the need to hide my illnesses anymore. I have made a lot of progress socially and overcome challenges but I still struggle sometimes to tell my peers when I can’t do something or when I simply don’t feel well enough to do anything at all, especially when they’re new people in my life and I haven’t yet built up trust, but it is a work in progress and if people do try to make me feel guilty about it or decide to leave me out then I am better off without them. Just like I am better off without the people who left my life when I first got ill. I need to keep reminding myself that I deserve better than people who make me feel ashamed of who I am.