The Mighty Logo

The Day I Heard the Words, 'It's Crohn's Disease'

The most helpful emails in health
Browse our free newsletters

“When the ground gives way and your world collapses, maybe you just need to have faith. And trust that you can survive this. Maybe you just need to hold on tight. And no matter what, don’t let go.” — Meredith Grey

“Your results came back, and we can confirm that it is Crohn’s disease.” Those were the words I heard that confirmed my diagnosis, and for me, that was when the ground around me gave way.

After that, I didn’t really hear much of what was said next. I was so preoccupied with the thoughts running through my head. What is Crohn’s? How did I get it? Am I going to be OK? Can it be cured? And most of all: Why me?

There was also a sense of relief, if I’m honest, that I could put a label on what was causing my symptoms, but it was also equally frightening. Still, nothing could have prepared me for that moment.

Things started to move so fast after that, and I was so emotionally unprepared that I bottled up all my feelings and emotions. After all, 17-year-old guys aren’t meant to talk about their feelings, right?!

I would start to get defensive if people brought up my health or asked why I missed so much school. For the most part, it was the changes that had to happen from my normal pre-disease routine that was hard to accept, along with the fact that there was now something medically wrong with me.

Everything I ever did had to change, even the simple things. I had to plan my day to the finest details. I would plan where the nearest toilets were wherever I went and which ones were less likely to be occupied.

Changes to my sporting and social life were the hardest to adapt to, especially as I never told anyone at school — not even teachers — what was going on.

These changes were too much too soon, and to make things worse, I was going through my A-level exams and university applications at the same time, and the added stress was most unwelcome. But at the end of the day, it’s all about how you cope with not only the initial diagnosis but with finding ways that help you live the best possible life you can.

That’s why I am sharing my top five tips on what helped me cope with my diagnosis, which hopefully some of you may find useful.

1. Find a doctor you trust. Many people when they receive their diagnosis usually end up sticking with that doctor or the person they get referred to. I saw three different IBD specialists before I found one I was comfortable with.

Even though your doctor is the one providing you with information and medication, you must remember you oversee your own health and have a part to play as well. I felt my opinions on treatments offered were not being considered at the time and that I was just seen as a set of symptoms. Long story short, I found a consultant, who I’ve been seeing now for the past 10 years, who treated me like a person. They not only listened to what I had to say but took an interest in my social and academic interests and how any treatments may affect those.

2. Avenger Assemble! I often compare healthcare workers in the NHS to the Avengers. On their own, they have individual skills and talents and can accomplish many things, but when they come together as part of a team, they are unstoppable. So, I’ve taken the concept of the Avengers and assemble my own team I go to whenever I have issues with my IBD. I know who to go to directly if I ever need answers or advice to certain questions or problems. This also helped me build a relationship with my IBD team and makes the trips to the hospital or receiving blood and scan results a little less daunting.

3. Self-care. One aspect of having a chronic illness is the implementation of not only lifestyle changes but changes to routine. You will reach a stage where at some point you will have to start taking care of yourself. This doesn’t just mean relying on parents (if you’re young) to arrange hospital appointments or remind you to take your medicine but also looking out for your physical and mental well-being.

For me, the one thing I could never live without was playing football. Every match I played – aside from getting in a workout – I would briefly forget I had IBD and felt like I was just like everyone else. Win, lose or draw, it felt good to be able to play and socialize with not only my friends but meet other people from the opposite team. Whenever I have a match coming up, it would give me something to focus on and look forward to.

Everyone is different and so is the way your IBD affects you, so whatever form of activity, whether it’s reading a book or listening to music, works for you then go for it if it’s accessible to you. Putting the time and effort into yourself is probably the greatest investment you can make, and even though it sounds selfish, at the end of the day if you’re not going to take care of yourself, no one is.

4. Phone a friend. One of the biggest mistakes I made was remaining silent about my Crohn’s for so long. I only told a few close friends when I at university, and from that day on things started to get easier for me.

Surrounding yourself with people you trust and people who care for you can be your greatest weapon in combating your chronic illness. There will be times where you just may need a shoulder to cry on or to unload any stress or anxiety you may be carrying. You may say, “Well, that’s what family is for,” and I agree, but there are some people who may find it hard to talk about their feelings with family, and so close friends can be such a part of your support system.

5. Volunteer. One thing  I have recently done is started to volunteer with Crohn’s & Colitis UK, which has made me more comfortable talking openly about my IBD. It has provided me with the opportunity to not only help raise awareness but help educate people on the impact of IBD on everyday life.

Doing my part for the Berkshire network has made me feel that I am in the fight to help find a cure with all the fundraising events that we do, as well as trying to form a local support group for others.

So, if you’d like to join us as a volunteer – feel free to get in touch.

Receiving a life-changing diagnosis is hard and will come with a lot of ups and downs, and often at times, it may seem that there is no light at the end of the tunnel. Nobody said it’s going to be easy, but remember to have faith, keep taking it a day at a time and that you’re stronger than you know.

You’ve got this. Keep going.

Follow this journey on The Grumbling Gut and Instagram @thegrumblinggut.

Getty image by sufiyan huseen.

Originally published: July 4, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home