Letter to my not-yet-diagnosed self

Dear 33-year-old self,

In a few months’ time, you’re going to be diagnosed with a chronic, painful condition which you’ve never heard of – ulcerative colitis – and it’s pretty much going to change your life for good.

I don’t want to scare you with this letter, but here’s what you’re going to be in for:

  1. A lot of pain. It will become constant. And believe it or not, you will somehow normalise it (most of the time, at least).
  2. Exhaustion which won’t go away, no matter how much you ‘rest’.
  3. Excruciating joint pain which will seem like your bones have been mangled in a wood chopper.
  4. Loneliness – this will be particularly hard. You’ll have many lonely hours in the bathroom, especially in the middle of the night when the rest of the world around you is fast asleep, and it will seem so unfair. But you’ll also lose friends along the way as you cancel outings, time after time, and sometimes at the last minute.
  5. You’re going to need major surgery – but you will face it as you always do, head on, and emerge brightly on the other side.
  6. You’ll have to reassess your hobbies – no more theatre, cinema, or concert outings. Restaurants will be dictated by bathroom facilities.
  7. Frustration – at the amount of things you’ve had to give up, the missed opportunities, the missed memories.
  8. Hospital stays – you’ll be hospitalised 4 times (and counting) in the upcoming 8 years.
  9. You’ll become an expert at pretense, as you constantly hide your daily struggles to go on with life as you know it.
  10. Your cat will become your constant companion, even following you to the bathroom at 2 am!
  11. Candy crush (you’ll see) will become a welcome relief while you’re on the loo and you’ll be updating your Facebook posts at all hours of the night!
  12. Those people who really get your condition will become shining beacons in your life (I’m thinking of you hubby, mother and mother-in-law, best friend, neighbour, and dear colleague).

But dear 33-year-old self, here’s what you’ll gain:

  1. A true understanding of suffering – and you will be humbled by this.
  2. You’ll learn to slow down, to accept your limitations.
  3. You’ll also learn how to truly accept help from others – you won’t have much of a choice anymore!
  4. You’ll appreciate every single ‘good’ moment to a degree that you can’t imagine.
  5. Your three-year old will develop a level of empathy that is quite unbelievable. Cherish this and hope that he will carry this on into adulthood.
  6. True friendships will be forged and made stronger. People you never imagined to be supportive will surprise you (and unfortunately, others will disappoint).
  7. Your priorities will suddenly become blindingly clear.
  8. You will discover that you work for an incredibly understanding company – this will feel like you’ve struck gold, especially in the worst moments.
  9. You will gain a whole new supportive community – online and overseas, and when it happens, you will feel like a you’ve breathed afresh.
  10. You’ll develop an “I don’t care” attitude towards things you previously would have hassled about – most of all, discussing poop will become very matter-of-fact and you won’t bother about it in the least!
  11. Using public conveniences will no longer be an issue.
  12. You will be incredibly touched by the kindness of strangers – such as the shop assistant who without any fuss allowed you to use the staff bathroom in a moment of crisis.
  13. You will truly learn not to judge people and will develop a deeper appreciation for humanity because of this.
  14. Believe it or not (given what life has already thrown at you), you will grow even stronger, unshakable, and you will suffer fools less gladly. Go for it!

So, wait for the ride of a lifetime, hold on for dear life, and look for the sliver lining in it, always.

With love,

PS Happy World IBD Day – remember, you’re not alone (even if at times it feels like it). Reach out to others like you, even if you’ll have to mostly connect with people overseas, it will make those 2 am loo visits so much easier!

4 thoughts on “Letter to my not-yet-diagnosed self

  1. Hi Marija, I have just read the very interesting article in the Sunday Circle about you. I feel like I have been living with ulcerative colitis and ileostomies for almost 50 years. I personally do not have this condition myself but my Mother did and had to have an ileostomy back in 1968 when the operation itself was still very new and unknown.
    My Mother had to have the surgery at 35 after having suffered for many years,like yourself. But I would like to say that she lived a very full life until she died aged 77 ,five years ago. So much so,that when she decided to retire to Mata at the age of 58 she drove here overland with my sister. But not content with being retired ,she worked for Janatha Stubbs ,as her personal assistant, until she was 75.
    I had to smile when you said that you named your colon Cassandra because she nicknamed her stoma Fred and that is how she would refer to it. I’m not too sure of the help and support that is available here but my Mother was a member of the Ileostomy Association of Great Britain and when she lived there was a regular visitor to new members.
    I wish you all the luck with your new life,as it were,I’m sure things will only improve for you now.
    Best wishes Jayne Farrugia.

    Liked by 1 person

    1. Jayne, thanks for reaching out. What a wonderful message, your mother sounds like quite a wonder woman, I would have loved to have met her! Thanks for bringing more words of hope to this blog, they are always welcome :)


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