All Clear - Crohn’s Mental Overload

It's weird to look up one day and realise a whole year has passed. And Crohn’s and Colistis is running a campaign to #FacetheFacts

I started 2023 with hopes of a peaceful year and end it worrying about whether I could find time between my hospital appointments to see the Renaissance film. I didn't.

2024 started with me feeling like I was staring into an abyss and has ended feeling like the skies have cleared and I can face anything.

Let's start with a confession: I used to envy people with cancer. It's an odd thing to admit because I have seen how devastating and difficult it can be to live with. I was envious because the pain is obvious. It's complex how I felt because I often felt my pain was misunderstood but I was so good at hiding it. I was mad that people didn’t inherently understand the problems I was going through without them being told. We understand the paid and hardship that any Cancer brings, yet Crohn’s is still so misunderstood.

I would find cool surfaces to rest on when my stomach aches got so bad they made me overheat but teachers would think I was sleeping in class. Excluding the times I was sleeping in class - quick story

I was falling asleep in Biology summer classes. I was almost falling off my stool resting on backpack out of it. And my teacher yelled my name and said "if you’re going to sleep, get out". so I did. Turns out that was not the right thing to do. I was told by my friends after my nap in the sixth from common room that the teacher had been surprised that i had left. I'd say oops but I do tend to take things literally when I am tired  and he wasn’t a very nice teacher anyway.

Or I would be late to class because I was too embarrassed to use the toilets when others were around during break times. Or the pain I would be in walking or sitting or existing. Or the fear of food I developed during my worst flares making it impossible to eat without anxiety.

I thought I would be able to document my appointments so that others could see the process of going through a diagnosis. A let’s take the journey of discovery vlog. I recorded a lot during this time but the exhaustion of the process and fear really did put any thought of editing on the back burner. And then there was the telling people. It felt wrong to reveal to certain people in my life what i had been through in an online post so I held off even longer. Then who should know you are going to hospital for diagnosis before anyone else. I've had a few people die recently and it was only after they passed I found out they had gone through treatment. I was resentful that I didn't have a proper chance to say goodbye but then I realise how time and distance had separated us. Why would I be in the know? Who makes the cut for a personal announcement?

I also have a thing for dramatic announcements in inappropriate places. But a dislike for people sending well wishes all at once. I was getting ready to start telling family and friends that my mum would need support and to take care of my brother. But those words never came out, because I realise they had a tinge of resentment in retaliation to something someone had said or done. I sat during Christmas as my cousin was shouting about losing a point, would I see this moment ever again? How would people react if I said it now. Then in February I got the all clear. Well just more Crohn's to be exact. And while the weight was lifted, the fear and stress I had taken on would not dissipate easily. The C-word had felt so abstract till I was faced with it and suddenly I realised that I was not mentally invincible.

Now the question I wonder is should I tell people now so they understand why I had been acting so weird and sentimental. I'm still seeing the docs a little more than normal to monitor the Crohn's. And then my cousins father got sick and then was diagnosed with Cancer and my experience fell to the back burner. Now I wouldn’t be able to discuss it. I had just experienced the diagnostic process and been able to complain about my preferred anaesthesia (to a doctor). But here it was in front of me. Grateful it wasn’t me, sad it was him, confused as to how life had suddenly turned out like this. And then he died. 

Could you call this a confession post. I don't have Cancer. I do have Crohn's. 2024 did not start out the way I had intended but as is my favourite trope in Turkish dramas if the season starts well it gets broken and if it starts broken it gets fixed at the end they all learn to love a little better and cherish those around them a little more. - The post originally ended here but my counsin’s dad died in November when I had originally intended to put this out so I made a few edits to honour that. So I guess in true Turkish drama fashion someone beloved died in a final plot twist. 

27 vs 7

 Dear Diary, I made it to 27.

20 years ago my doctor were worried that I would not make it to 7 years old (my mum told me this, I vaguely remember a concerned looking doctor and terrible mashed potatoes). I have this picture from 19th December 2002. The hospital sent round some mascots to take pictures with child patients and hand out Christmas gifts. When I look at this picture, I remember watching a boxing match on boxing day and thinking that's what boxing meant. Or the doll I saw on my hospital bed when I went back to my room after taking this picture, it was pink.

It took about a year for me to be diagnosed. No one could figure out what was wrong with me as I lost weight. It's a growth spurt, an eating disorder, maybe she's pretending to get out of school. At 6 years old I was a pro at hospital visits, the routine of spending half the day in the waiting room, having a blood test done and being sent home.

I eventually met a doctor who cared enough to run one more test. It's hard to recal the details, but I do remember one day it was my last day in my local hospital and then I never went back. I was being referred to the Royal London Hospital in Whitechapel.

Over the years I have met many doctors and nurses. I can't remember all their names or faces. But there have been some stand outs over the years, the nurse who brought a damp sponge for me to wet my mouth because I wasn't allowed to drink water, the nurses who would teach me how to say please and thank you in other languages. There was a student doctor back in 2002, who would eventually become my primary doctor. Shout out to Dr L for taking care of me all these years.

I was diagnosed with Crohn's disease over Christmas 2002. The photo marks the first of many hospital stays, countless blood tests and investigations. I do wonder how many medical journals I am uncredited in, and if any med students wish for an autograph.

I had two photos from that day. One with Scooby Doo and (the one I still have) with Bubble. I haven't seen the Scooby Doo one for many years so I must have lost it at some point. Personally I liked and watched more Scooby Doo more growing up than PowerPuff Girls, but Bubbles was my favourite Powerpuff Girl.

The life a child patients is strange. Some days I feel like I have lived 10 lifetimes in 1, whilst running blindfolded through the a storm. I have experienced things that no child should have to go through. I don't remember a lot of things that have happened over the years, but I can remember how I felt. There is a quote from Doctor Who, No one can ignore the sound of children crying. I spent many nights listening to other children cry. I did a fair bit of crying myself.

Being diagnosed young has meant I missed out on many things, I don't recall a healthy version of myself to compare to. I was the sick kid in school who would take afternoons off. I never told my friends what I was going through. I was the kid with a strange feeding tube on her face. I was scared, blindsided even, by many things that were happening to me and at times could barely tell the doctors how I was feeling. I didn't know anyone like me and I often felt so alone.

It was the age of dial-up internet, and flip phones. There were support groups around but I was too young to know how to access them, and my grown ups weren't exactly tech savvy. My first phone was a Motorroler Razr which I got in 2007. The only place I saw people like me was on hospital wards. Not exactly the easiest time to make friends, when your puking your guts out.

These days finding other people with IBD is just a click away, you may even be watch them on TV (Any Abbott Elementary fans?). There are so many communities #spoonies and social media pages to meet other people like me. It's nice and I am a little envious too that I didn't have the same accessible support in my early days.

 

Having so many life milestones happen in a short period of time and over Christmas makes it hard to know when the best time to talk about my story. Do I mark it by the date on the photo, 19th December 2022 or the birthday I made it to? This year, I chose to mark it on my 27th birthday, another milestone, the start of my late 20s.

Many variations of this post have sat in my drafts and in notebooks for years. Everyone's IBD journey is very personal to them. There is a lot I want to say and some parts are easier to communicate more than others. The last draft before posting actually had the 2002 photo of me and Bubbles. But as I looked at it, I got so emotional I almost deleted this entire post, I am not ready to share it. After 20 years I'm not sure if I ever will be.

It breaks my heart every time. That smiling 6 year old, almost 7 years old, in her her blue butterfly pyjamas, doesn't know...

~J at 27

Phone a Friend

 

Talking about Crohn’s

"If something happens I will tell you"

I recall the days I used to sneak off to drink Modulen with Nesquik Magic Straws during lunchtime. Or the days when I'd sleep in the medical room because I was already exhausted by 11am.

The inevitable conversation we all have with friends... "I have Crohn's disease" followed by confusion or, in the rare instances, "That thing Dynamo has?" ...can be a challenge to navigate. As a child I would hide my condition (as much as a 6 year old can) and growing up I avoided talking about it out of sheer embarrassment.

Secondary school, was the first time I spoke about my Crohn's to friends. I'm not even sure how the topic came up, but I do recall some very "serious" conversations on park and school benches. As I've grown older these conversations have become easier and more casual. In the last year, I have probably spoken more openly about Crohn's to my friends, than in our 10+ years of friendship (no benches required).

The lockdown slow down has taught me many things, but especially: how to be more open about my condition. My friends have always been my first point of call whenever something good has happened or I needed advice; but my condition was always a thorny subject for me. Over time though, I've come to realise that, talking about my treatment, and the whole host of other things that accompany Crohn's, has allowed them to understand this part of my life better and in turn me as well.

I still feel uncomfortable when they express concern for my health "how are you" is a question I want to dodge, alongside the "dating" questions from family. (The answer to both being: "the same as last time") I dislike seeing them worried, and knowing that it is out of concern for me, has always made me feel out of sorts.

Last year I made a promise though- "If something happens I will tell you". I have found that offering information preemptively, allows them to stay up-to-date with "how I am" without me feeling some-type-of-way when they ask.

Are you a sit down serious conversation type, or do you prefer to drop it in casual conversation? Either way, having these conversations becomes easier with time and practise. If your not sure what to say the best opener I've found is "I have Crohn's disease" then tell as much or as little of your story as you are ready to share.

We can break the stigma together. One friend at a time.