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How Chronic Illness Has Changed My Personality

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Living with chronic illness is difficult to put down on paper. You can read about various illnesses on several different outlets but this doesn’t paint a true picture of what life is like on a day-to-day basis.

I have always been somewhat of a Duracell bunny when it comes to energy. I could quite happily get up at 5 a.m. for an hour’s gym session before a full day at work. I always had energy to see my friends on the weekend, often staying up until the darkest hours.

At first I dismissed my desire to slow down as me getting older. I’m married now and I figured it’s quite normal to want to give up the night crawling, when you have someone at home to share your time with. However, I soon realized there was something else underlying that needed my attention. I’ve written a previous article, “How Depression Affected My Outgoing Personality,” which details my battle with depression in 2016. It was during this time and the months that followed that a selection of symptoms took hold of me, which at first I dismissed as stress-related; we often do.

Banner inviting you to join the new Crohn's & UC Support Group

Eventually I started to really feel like I was “sick.” I would wake up most days and never quite feel that energy and desire to get up and go.

After many doctor and hospital appointments, and many unpleasant tests, I discovered I had Crohn’s disease and iron deficient anemia. I really didn’t understand what either of those things meant, so it’s understandable that family and friends don’t really understand the depth of how this disease can take over your life.

Everyone is different and has different experiences. I’ve heard of people who have lived for years in remission and I’ve also heard of people who are one surgery away from losing their whole bowel. For me, well, the worst part of this disease has been bidding farewell to my old self.

One day I went to a concert with my husband and it was a very long day, with lots of traveling and standing. The next day I woke up feeling like I’d been hit by a train. This carried on into the week ahead. I suddenly realized that I am no longer fit enough to spend a day at a concert, or if I am, I need to plan way in advance to ensure I have a seat, my accommodation is close to the venue or scrap the whole train idea and just drive.

The weeks that followed taught me many other new lessons about myself. I realized I can no longer plan in advance. I may be fine the day you send the invite but on the day of the event I may wake up and be unable to get out of bed. I noticed myself retreat or “go under the rock” as I call it. What I mean is, without knowing it I stopped reaching out to people. I think subconsciously I was doing this because I didn’t want to be that sick friend. The one who every time you speak to them, all you get is “I’m poorly again.” I know it gets old all too quickly for some people so I decided to silently battle it alone.

Throughout my journey I have also heard various “have you tried this” suggestions. Can I just say, being told to try and cure an incurable disease with “positive thinking” or any other non-medical procedure is highly infuriating. No one wants to be sick, and by telling someone to eat a certain way, or try a certain method insinuates that person is the reason they are sick. I appreciate feedback and I do a lot of my own research to try and find holistic ways I can gain remission, so I don’t need to hear it from anyone else.

The most important lesson I have learned is to listen to my body. If I wake up totally fatigued I do a quick rundown of my week in my head. Do I need to be up and dressed today? Can I get away with dressing down to be more comfortable or do I even need to leave the house at all? I’ve learned that I can often muster up the energy to get through my working week but every evening and weekend I crash and that’s something I’m learning to live with. I write this to raise awareness. Don’t always assume because someone is dressed and at work that they are OK. Some people don’t have the option to stay in bed. It’s the moments we are alone we show our true struggles and it’s often only the people closest to us who see these moments. I’ve spent mornings crying in the shower, and then gone off to work for the day with a smile looking like my usual self.

I understand now that my personality has changed, because I’ve had to. The extrovert is now an introvert and I’m OK with that.

Getty Image by Ganna Gavenko

Originally published: August 19, 2018
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