This is part of a series about how my ulcerative colitis impacted different parts of my life. This is not my usual type of post. There are no tips, learnings, or useful bits of IBD information.

These are simply the raw and honest thoughts that I have when I’m feeling a bit annoyed with my life. Times when the fatigue gets too much, I’m stuck indoors, or I’m laid awake at night. I’m sharing this with you simply because I want you to know that you are not alone.

I can’t help but wonder what my life might have been like if I didn’t have Ulcerative Colitis. I think about all of the things that would have been different, and then I wonder how much different, or better my life would be now.

Fortunately, I had gotten through school before any IBD symptoms appeared. I didn’t like school anyway, so I can’t imagine having to go through it whilst also dealing with a chronic illness and symptoms that most teens probably don’t want to talk about!

I left school with very little in terms of qualifications. I had shrugged off the warnings from my family about education being important and had always said that I was happy to work in a factory.

It turned out that I wasn’t happy to work in a factory. I worked in a few, and because of things like commute time and unsociable hours, I left.

A friend of mine was a presenter at a local community radio station, and he suggested I help out there to prevent gaps in my CV. They needed a volunteer to cover reception and to do some admin work. It wasn’t something I had thought about doing, but I had no other ideas either, so I went to see the owner and started the next day.

I liked admin! The reception wasn’t busy, so that didn’t take up a lot of my time. I set to work on organising the filing system and typing up template documents for the stuff that was regularly needed. The owner was impressed, and I was enjoying myself! The trouble was, I wasn’t being paid, so I still needed to continue with my job hunting. I began applying for admin roles, but having no qualifications was a problem.

I was lucky because my aunty worked in a job which helped teens access funding for education. She found me evening courses to re-do the basics that I had failed at school. I say failed, but the reality is that I just didn’t turn up for my exams. I could do it all, but I needed a certificate to prove it. Then, she found me more evening classes so that I could gain certification in Microsoft Office packages and word processing, to help with my admin job hunt.

The radio station had closed due to a lack of funding, so I got a job in another factory and continued to apply for admin roles, but we were heading into a recession at the time and there really wasn’t much going. What was available, a lot of people were applying for, so me and my minimal experience didn’t even get a chance to get my foot in the door.

Then, I was diagnosed with Ulcerative Colitis. I had surgery and a nasty ileostomy which constantly had leaks. I was overwhelmed by fatigue and had to cut my hours at work. I was too tired to even look for jobs after I had finished work most of the time, and I was in the process of getting my health back on track so that I could have a Jpouch built. I was certain nobody would want to employ someone who had two upcoming surgeries planned, so I stayed where I was.

When the surgeries were all done, the fatigue stuck around, which I was disappointed by. I still didn’t feel I had the energy to look for a new job.

My way out was via voluntary redundancy a few years later. By then, it had been five years since I had done any admin work and my qualifications were old. Apprenticeships seemed like the only route forward. I got a lot of knockbacks due to my age, which was so frustrating. Again, I blamed my IBD. I was behind with my life because it had been on pause for so long.

Finally, I found a role in a marketing agency, which was within walking distance from my home. I completed a Marketing NVQ, but that had to be extended because I’d been suffering from frequent Pouchitis which had left me exhausted. Then, I did another qualification in team leading through the same college that I’d done the Marketing NVQ with. I was so worn out by work and studying at the same time, that I barely had a social life or stayed in touch with friends throughout. Having IBD felt so hard, like nothing was simple and easy anymore.

After five years, I felt like I had outgrown my role where I was. I started looking for more qualifications which might help me find a role elsewhere, and I found some useful bits on an open university website, so I updated my digital marketing qualifications through that. Again, this was around work, so it left little time for anything else. I looked at what jobs were available and everything was a long commute away or too many hours. Then, of course, my health started to decline and again I was stuck because I wasn’t sure what was coming. Long trial and error with meds, time off for infusions and possible surgery left me feeling stuck in a rut. How could I apply for new roles with so much uncertainty?

I felt like everything I had done was a waste of time. I felt like progressing was impossible. I felt like every time I took the initiative to push forward and keep my qualifications up to date, IBD pushed me straight back into chronic fatigue, and uncertainty.

I got there in the end, after having my Jpouch removed in favour of a permanent stoma, but it felt like a constant battle the whole time. I can’t help but wonder what life would have looked like without the frequent pauses.