Accepting I have a lifelong illness

 

I’ve always liked to fantasize that I’m a character in a period drama. I’d be an elegant young lady swept off my feet by a charming young gentleman, a Jack Dawson, or Laurie from Little Women, or Pip from Great Expectations type and we’d run away together and live an enchanting, picturesque life in the countryside. The truth is if I was actually born in that period I guess I would’ve just ended up dying an unglamorous death whilst sitting on the toilet.

Taking in the fact that I now have a lifelong disease has been something I’ve been working on day by day and I think will take a while for me to get to grips with. When it first crossed my mind that I’m technically ‘diseased’, my whimsical brain immediately conjured up images of rats and flies and dog shit and rabies and thought, that’s really gross I don’t want to be labelled with that. But then I thought, Crohn’s automatically gives me a diarrhoea label anyway, so adding on the word ‘disease’ doesn’t really make it any worse. But I think I will still call it an illness instead for my own peace of mind.   

My first few weeks out of hospital – trying to figure out how ill I actually am and shitting in public toilets

After living with my Crohn’s undiagnosed for so long and not acting in the slightest the way a typical ill person should, my diagnosis came accompanied by a wakeup call that my body is a lot weaker than I’d thought and in need of a hefty lifestyle change to enable me to recover across the coming months. Accepting that my second year of university had ended early and sitting in hospital whilst everyone was celebrating the end of exams was frustrating. I still don’t like knowing that it’s unpredictable how long my body will take until I can go back on heavy nights out, moreover, at the moment even just a trip to the local pub or cinema is risky because I’m probably going to be in pain and need to have a toilet nearby.  

Between early May when my ankles gave and up until I came out of hospital, I really hadn’t done much walking, so when I was walking around my hospital room and realised my legs had become too weak to even rise up onto my toes - I used to be able to double pirouette in pointe shoes, it did help me realise that I was gonna have to give it a few weeks before I could jump back into a nightclub. My initial thoughts coming out of hospital were, well I guess I just sunbathe and eat fatty foods until I’m better now. I really had wanted to get a job this summer since I am a student so I have no money, but it’s difficult to predict when I will be healthy enough to do so. (Unfortunately my tummy aches and diarrhoea got worse again last week and they told me in my appointment earlier today that my inflammation’s gone back up). Phase one of building my strength back involved a daily walk around my local park alongside a well-earned stop for a hunky slab of cake and a virtuous scoop of ice cream. My stamina was improving notably quickly and I was able to walk substantially further and more comfortably each day.  

On one of my first evenings out of hospital when it was really hot, I asked my brother if he’d walk me down to one of our local pubs that has a pretty garden embellished with fairy lights – it’s still kind of scummy, but I guess it had some kind of magical feel to it that I was craving after spending the whole day bored in the house. I also wanted to get my face out for people to see; I was feeling quite insecure about how skinny my arms, legs and ribs were looking at the time, and I don’t know if this is a strange way to deal with it but I thought going out in the open and letting people see my body would help me feel more confident. Amid one of our extensively deep, pensive conversations that me and my brother always seem to fall into when we drink together, he mentioned that he’d thought he’d often sensed an underlying sombreness behind me and I remember stopping him in his tracks and saying, no you’re wrong there, I would consider myself to be a happy person. I often think back to this moment whilst I’m stuck in the house unable to go anywhere, sitting around getting uglier because the steroids I’m on are giving me acne and hamster cheeks. I have to remember how happy I was throughout the past year whilst I hadn’t even clocked that I was ill and appreciate how lucky I am that my doctors are so on it with my medication; trying to fix me up as quickly as possible because it won’t be long until I’m able to return to normal life. I know I’ve got a great year ahead of me and who even cares if I have acne.

One thing I had to look forward to that kept me going through my first few weeks out of hospital was my university’s Shakespeare trip to Stratford upon Avon. This was my first time leaving the house for more than two hour bursts so it was a huge deal to me, furthermore, quite intimidating because I wasn’t sure whether I’d actually have enough energy to make it through each day. Since my parents were on holiday at the time, my lovely grandparents generously volunteered to take me up there and stay in a local hotel in case I needed rescuing. Unfortunately, the morning I was due to leave for Stratford, my Crohn’s took a turn for the worse and I woke up feeling completely wiped out, with no appetite and in quite a lot of pain. Obviously I was not going to let this stop me going and my grandparents were concerned when they arrived and I was still in my dressing gown and hadn’t packed, but I’d prefer to be strolling around Stratford with a tummy ache rather than just lying on the sofa, miserable at home.

The trip was a really lovely experience. I had been really looking forward to seeing my friends again and it was amazing to escape from home and explore a completely new place as pretty as Stratford. I had to shit a lot of times in public toilets. I think on the Tuesday I actually shat ten times that day. I was unsure of how much to write about toilets in this blog because I don’t know if people really want to hear it (maybe they do?), but it’s the thing that’s on my mind the most at the moment. We went to watch Richard III, which I really enjoyed, but I was in a lot of pain the whole way through it and I really hope the people sat opposite me in the audience couldn’t see how far I had unzipped my shorts. Half way through the first act I had to get up to go to the loo and I felt really stressed because I knew I was meant to be getting better and not worse whilst I was on the medication. I wasn’t sure whether I was meant to ring the hospital and I didn’t want to ask my parents because I didn’t want to worry them whilst they were on holiday. I ended up having a little cry in front of the nice old man who worked in the theatre and asked if I was okay when I came out the toilet; I’m not someone who cries very easily and I haven’t told anyone that happened yet so only the theatre staff who saw me know about that.

Sometimes it’s hard to figure out how ill I am because when I’m sat down with no pain I feel completely like my normal self. My lovely friend had invited me to join her at another friend’s party followed by a trip to a club and this sounded exactly like what I had been wanting to do for ages. Unfortunately, the diarrhoea was quite bad at this stage and I didn’t really feel like I should drink alcohol. So, did I end up going to a house full of strangers, completely sober, whilst I had diarrhoea and stay out clubbing until two in the morning? Yes I did. Maybe this wasn’t the wisest thing for me to do, but I survived it with the help of a very supportive friend. Furthermore, I did make one sensible decision this week in turning down a hiking trip to Snowdonia, despite part of me telling myself I’ll still be able to do it. I know in the future I definitely won’t allow my illness to stop me from doing anything that I want to, however for now until my Crohn’s and anaemia have stabilized and I have a better understanding of how to adjust to my limitations, I don’t think getting caught short on a mountain sounds like fun.

Embracing the uncertainty of the future

The only reason I’d heard of Crohn’s before I’d found out I had it was because I knew that Pete Davidson had it from his movie ‘The King of Statin Island’. This lead me to look up other celebrities with Crohn’s and I discovered an American gold medallist Olympic swimmer called Kathleen Baker who was diagnosed when she was twelve. I thought that if she was able to sustain her body at an Olympic standard whilst she had the disease then I have no excuses as to why I can’t do anything myself. The main thing I don’t like about having Crohn’s I that it is impossible to know how long my flare up will take to recover and how often I will get flare up in the future. This means that I have to accept the fact that it could have an effect on my studies, career and social life, however on the other hand, it might not at all.

Another thing that’s constantly on my mind at the moment is my weight. Having an illness that makes me lose weight, whilst simultaneously, a side effect of the steroids that I am taking is weight gain, means that it’s currently out of my control what shape my body is going to take across the coming months. Furthermore, I’m finding that the illness is still causing me to struggle with my appetite sometimes, but my medication can also make me feel constantly hungry, therefore my eating habits are very strange at the moment. I wasn’t sure whether to write this bit in because it’s not the body positive message that I want to convey, but like most people I had put on weight over lockdown, so before I knew I was ill, when my weight originally started going down (before it got too much and out of control), I did actually feel happy about it. Looking back, I feel really weird about the fact I was happy about it knowing that it was the disease that was causing the weight loss. Also, if I’m with a boy and he says something like, you’re really tiny aren’t you, I don’t want to have to say, oh it’s because I’ve got Crohn’s.

Currently, it seems the steroids aren’t having the desired effect of reducing the inflammation in the way that we’d hoped, so I’m back on eight a day at the moment and am hopefully starting an infusion of a different drug in two weeks. I also have a bone scan booked; hopefully my bones are all okay but it’s nice to get it checked. I am awaiting the delivery of a RADAR key for disabled toilets. Initially I felt guilty using them because I don’t look disabled and I felt like I wasn’t necessarily in need of them compared to people with other disabilities. But, I do qualify for them and at the moment I do feel more comfortable with the privacy they provide and the immediacy when I need to go.

I’m learning more about my illness every day and each week am facing new challenges. It brings me a lot of reassurance that I’ve already had the courage to have the colonoscopy, because knowing that I was brave enough to have a camera up my bum makes me feel that I can face anything that comes my way. My increased appetite from my medication has resurrected my hobby of cooking and I have been making a lot of fancy meals for my family. For the moment I’m mainly just chilling in the sun and eating burgers, but I’ll see you next blog with more stories about me shitting in public places.