An open letter to Crohn’s Disease

 

crohnsletter

 

Dear Crohn’s Disease,

If I’ve planned this right, this post should publish just as I am on my way to have surgery for another fistula problem that you’ve caused me. Who am I to let an op stand in the way of a good blog post? After all, it’s Crohn’s and Colitis awareness week and the whole point of this week is to show the awareness of the good and the bad. The exact point of 7 Days of IBD is to show what you can do to people. That one day a patient can be feeling completely fine and the next day (literally in my case) they’re sat with a surgeon wondering what the hell went wrong. That’s what makes this disease so difficult for many of us to live with: we literally don’t know whether our day will begin with a smile but end in agony.

While I was speaking to the surgeon today, I couldn’t help my eyes filling up with tears. I am usually extremely positive, I pride myself on the fact that the facebook group about Ibd  I run is full of gratitude and positivity rather than self-loathing and bitterness. But at that moment I couldn’t understand the situation I was in. I couldn’t understand why you were doing this to me at a moment in my life where I’d just started a great new job and was happily settling down looking forward to my first Christmas in my new home. It seemed cruel and callous that only four months before I felt I’d claimed a victory of an almost completely normal colonoscopy and a year med-free, for you to be waiting in the wings all along. Was it part of your plan? To build me up, to give me the confidence to get my teeth stuck into my new job. throw myself into blogging only for you to pull the rug under my feet a moment later?

I blogged only yesterday about the psychological problems you cause many of us. It’s not enough that you cause us to feel ready for bed as soon as we finish work, that you cause us to wince in pain. that you cause us to clutch our stomach wondering what has caused you to flare up again. Oh no. You’ve also leech into our heads. Our hearts race every time we get blood results. Our palms sweat everytime we await the phone call from a doctor. When we’re well we can only fret about when you will visit us again and when you’re there our brains become a mix of worry, guilt, anxiety and confusion. You’ve taught us to expect the worse scenario so that every time a doctor pauses, we’re expecting him to deliver a killer blow (I can’t tell you how many time I’ve listened to a long pause, my heart in my mouth only for the doctor to say ‘hang on a second, I just need to refresh that page.) You play with time- days waiting for help seem to go on forever bur days in remission seem to go by in a flash. We’re always wondering in the back of our mind whether we can ever get rid of you for good.

Yet a few hours after my trip to hospital, my tears had dried and my default fight mode had set in again. There were so many sick, desperate people in the hospital that I refused to give into your demands. I was busy googling advice for post-surgery, ordering some fresh juices to help my healing and replying to comments on my blog that thanked me for writing about how they were feeling.  Perhaps you might consider it denial but the thing that you hadn’t reckoned on is that I don’t give up.  I deserve to be healthy and I will be one day.

Some people say that I’m really brave but there are plenty of patients like me refusing to give into you too. Patients who are determined to have careers that they love and not give in to your demands to lay at home in bed. Patients like me who are intent on travelling the world even if they have to take their medication/colostomy bag/can’t wait card/gluten free foods/cleaning supplies along the way.  And their are patients who are just too sick to do any of those things but are still refusing to let you define them.

There’s lots of people on my timeline sharing hospital selfies or snaps when you’ve brought them to their lowest eb. If you look at my blog, I never share pictures of those times. Why would I want to remember that time that I was stuck in a Chinese hospital with nothing to eat and nobody that spoke English? Instead I will remember the stranger that day who offered to take me to the train station and help me get home; teaching me that we’re at our most vulnerable we sometimes realize how kind people really are. Why would I want to remember how low I feel today? How I feel like I’m barely coping? Instead, I will remember the twitter and facebook messages from fellow sufferers urging me to get better and offering to help. See, we might not know each other very well but we’re all united by one common goal: to defeat you. So I’ll remember the fact that through crohn’s I have met some wonderful people and I’m so proud to have written a blog that has helped many of them.

Instead I’ll share some different pictures…

 

fightingcrohns

 

Like that time I flew to Thailand for my brother’s wedding, the space in my case taken up with cleaning supplies and dressings for my wound. Or the times I lived in and travelled all over Asia. Visiting Bali, China, Hong Kong, Thailand and more. The humidity made my symptoms flare and the process of having to translate my dietary requirements into different language was extremely frustrating. Yet the pictures speak for themselves: I carried on determined you wouldn’t ruin those memories.

And that’s what 7 days of IBD is all about. Sure we want to raise awareness of your symptoms, your treatments and how more and more people are affected by you. Yet, it also goes beyond statistics and facts: it’s about highlighting the lives of real people who are all fighting in their own way. I don’t claim to be anything special and I am so grateful that I am not as badly affected as many people whose symptoms are much worse than mine. But I do know that my fight with you has probably only just begun. Every day new studies are published, new trials are started and more patients are being helped. It may take months, years or even centuries but one day the battle will be over. And I’ll have won.

 

3 Comments

  1. Pingback: Welcome 2016
  2. April 16, 2018 / 6:11 am

    I have been a victim of this peculiar ailment for almost 5 years now. Going through remission period now and just wondering if the disease will even be cured…

    Thanks for your resourceful post.

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