2 Years Living with Crohn’s Disease

It feels like only yesterday that I wrote about the life lessons that living with Crohn’s Disease for 1 year had taught me. Yet here we are, 2 years of living with Crohn’s Disease have gone by.

The 2nd year certainly the most unpredictable and toughest year of many people’s lives.

Having that diagnosis timestamp of when chronic illness let itself be known is a weird one. Calling it an anniversary or milestone feels totally wrong. For me however, those year markers have resulted in a time of reflection.

A year ago, I wrote the following as the main lessons that Crohn’s Disease has made me realise.

• Mental health deserves the same level of treatment as physical health
• Realising what is truly important
• Learning to plan less and live in the moment
• Finding joy in the little things

If anything, these lessons resonate even more and relate not only to chronic illness, but to the pandemic too. We have all had to adapt to a new way of life and people’s mental health has been impacted hugely.

Another year having passed, I have developed an even deeper understanding of these areas, my wellbeing, and what really matters to me in life.

Crohn’s has changed me as a person

There’s a lot of content out there about not letting your chronic illness define you as a person. The truth is though that chronic illness does bring about change in your life. The past couple of years have been the most transformative for me.

Living with Crohn’s is tough, and if I had a choice, of course I would wish not to have it. The condition affects your physical and mental health, and it is with you every single day. Even in remission, there’s a feeling of not be able to fully relax. You’re so hypersensitive to any sensation in your body and the possibility of another flare up. Plus there are the memories of previous hospitalisations and traumatic moments which, for me, are hard to shake off.

A part of life, not the whole of life

Rather than not letting it define me, my goal with my Crohn’s has been to make it a part of my life, and not the whole of my life. A nurse said this to me once and it has helped my mindset and how I deal with my condition.

Since writing my post a year ago, I have been grateful to receive both 1:1 and group mental health support. Both have helped me to adjust to chronic illness life and really put the steps in place to find myself again and live in a way that still allows me to do the things I want to do, while supporting my wellbeing.

It’s okay to talk. It’s okay to ask for help.

I still don’t have it all figured out and I don’t know if I ever will. I have bad days when everything gets too overwhelming and my anxiety is hard to get a grip on.

Something that has helped me to get to a place of feeling more confident to deal with my Crohn’s is through asking for help and being more open about how I’m feeling. I know from previous experience that when you keep things locked up in that box in your mind, soon enough it overflows.

Having professional mental health support has really helped me. It goes further than that though. Sharing my feelings with my family and vice versa has helped us to understand each other better. When I went back to university after my diagnosis, I spoke to the disability and study support services to help me manage my final year. Knowing that there are healthcare staff and chronic illness organisations out there to talk through any health-related queries – which don’t have to be an emergency – has been reassuring.

There are times when you just need to get things off your chest and that’s fine, because living with a chronic illness is a burden and you shouldn’t have to bare all the weight on your shoulders alone.

Asking for help and opening up about how you are feeling is not weak in any way. It is a chance to make your life better and support your wellbeing.

Opening up about how you feel is not easy, especially if you are doing it for the first time. If ever I am going to the doctors or talking through any health issues, I often write down what I want to say first, and this can be really helpful because you can plan out how you want to say something. Mental health charities also are great ports of call, both in terms of talking to someone, but also sharing tips on how to open up about your mental and physical health if you haven’t spoken about it before.

Sharing about my health online

Since my Crohn’s diagnosis, I have been more open about my health online. This is something that is a personal choice and please don’t do it if you don’t want to.

My choice to share my condition online stemmed from seeing other people with chronic illness sharing their experiences when I was first diagnosed. Having a chronic illness can be very isolating and you can feel like no one understands. I know that is how I felt when I received my diagnosis, but it was through finding a community online that I realised I wasn’t alone and there were people going through similar things which I could relate to.

It became apparent after I was diagnosed that there was a lot of stigma surrounding invisible illnesses, mental health, and bowel conditions. This stigma can contribute to longer diagnosis times, misdiagnosed conditions, and making it harder to open up about how you feel for fear of being judged. I wanted to raise awareness for the realities of going through chronic illness and mental health struggles, and to try and create a better world for those living with chronic health conditions.

A few final notes

This post has been one of those times where I just wanted to write, which is really why I started blogging in this first place.

If you are dealing with Crohn’s, IBD, chronic illness, or mental health struggles, here are some places to start:

• Crohn’s and Colitis UK
• Bowel Disease UK
• InvisiYouth
• CisfaUK
• Astriid (a great organisation supporting people with chronic illnesses to find meaningful work)
• Mind
• Samaritans
• Time to Change
• Young Minds