1 Year Living with Crohn’s Disease: Lessons Learnt

As mentioned in a previous post about IBD myths, Spring 2020 marks a year of chronic illness life. At least, a year since my body decided to let it be known to me that I have Crohn’s. Sometimes it still feels like yesterday and it’s hard to get used to the idea of it being that long. Other times, it feels like I have always been living with Crohn’s disease, and it has become the new normal.

Naturally, I would rather not have IBD at all. However, the diagnosis has taught me things about myself and life in general, that I don’t know I would have learnt otherwise.

Mental health deserves the same level of treatment as physical health

IBD is a physical condition. The symptoms and treatment are all focused on physical health.

From flare ups, to hospital admissions, to even the medication and surgery used for treatment, the physical side is horrible. What’s more, there’s no cure, so physically, your body goes through a lot.

While physically the condition is really bad, physical problems can heal and you can get respite from them. There are treatments which help and there are periods of remission when your body gets some rest. 

What doesn’t heal easily and what is harder to escape are the mental health effects. I feel like my mental health has been impacted just as much as my physical health, if not more.

Wrapping your head around the fact that there is no cure and that IBD is a condition you have to manage for the rest of your life is not easy.

I feel like I have made progress from an acceptance side of things. However, the mental struggles are more than that. After some distressing flares resulting in hospital stays and being ill and in pain, those traumatic times haven’t left me the minute the flare has stopped and I was discharged. The memories stay with you and the fear of the same thing happening stays around, making it hard to move on with life.

As much as staying physically healthy is crucial, looking after mental health deserves the same level of respect.

Realising what is really important

The lessons I have learnt from living with Crohn’s Disease are likewise relevant during the current Covid-19 outbreak. I realised how many things I took for granted before I was diagnosed. 

Simple things like good health, having energy, seeing people and going out when you want to were all taken for granted before.

Now though, if I have a day where I feel ok and get to spend time with my family, I’ll consider that to be a pretty good day.

Learning to plan less and live in the moment

You’ve seen my bullet journal posts, you know I’m a serial planner.

Since having Crohn’s though, I have realised that planning ahead has gone out of the window. You don’t know how you are going to feel one day to the next. The only events I have been able to plan ahead for are medical appointments.

I’m doing my best to live every day as it comes and take life one step at a time rather than planning months ahead.

Find joy in the little things

During times when your health isn’t on your side, you may need to cancel plans, stay at home and rest, or seek advice. It’s tough when you can’t do the things you want to do.

Unfortunately, a negative side of social media and the internet is logging on and seeing people doing things that maybe you can’t do (although less so in lockdown as we are all in the same boat). 

I have learnt that you need to shift your mindset, practice gratitude and find happiness in the little things. 

Focus on what you can still do and enjoy, rather than what you can’t do. This applies to so many things in life.

Whether you are newly diagnosed with IBD or another chronic illness, I hope you find this post useful. While living with Crohn’s disease is not fun, the positive thing we can take is that it teaches us things about ourselves.

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