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. 

2023 New Year. Same Me

 Dear Diary,

It's finally the Lunar New Year - if January 1st hasn't gotten off to a great start you can use this one as a do over. It is the year of the Rabbit. The Rabbit in the Chinese Zodiac symbolises, peace, reflection, and quietness.

Time has flown. I feel like a different person from July last year. I am a little bit smarter - I learnt three new words: copacetic, quixotic, sennight to use in Scrabble. I started therapy, restarted driving lessons for the 3rd time, was a model in a catwalk show, finally spoke to my doctor about my leg problem.

Of all the holidays, I like New Years the most. It's a chance to reflect on the time that has passed and consider where I want to go next. Paris, Barcelona, Rome, Edinburgh, new hobbies.

Last year I felt lost, stuck, and sick. And by mid-year I couldn't figure out what changes to make. Choosing between a rock and an unknown place. My body wasn't working the way I wanted it to and I couldn't work out what was happening to me. A perpetual state of stress. Feeling unwell, feeling unwell to work, working to much to make up for time lost. Stress has always been a major trigger for my Crohn's, and dealing with stress requires a choice being made. Which in and of itself is another thing to be stressed about.

Some choices were simple, 1 pillow or 2. The correct answer by the way is 4 (head, back, two for feet). The more abstract ones , when it feels like the rest of my life hangs on that sole decision at that very moment; those choices I think are better made of the heart. I find that often times if I stick with the "logical choice", I burnout faster, feel resentful, get stressed easier, and ultimately untethered to my true self.

In hindsight, the choices I made with my heart, have mostly been right for me. Going to therapy was a decision made one night whilst laying in bed, because I felt like it. As was booking a cheap weekend flight one Sunday morning because there was no perfect time to go.

This year, I don't want to wait half a year to start figuring out what I should do. Being proactive about taking care of my mental and physical health is my priority.

New Year... True Me. I intend for to live this year trying to listen more to my instincts, taking better care of myself, writing every other week on this blog, and making the occasional vlog.

May this year be filled with peace and hope like the gentle spirit of the Rabbit.

October Blue's and Mental Health

 Dear Diary,

"This is the time of year when depression increases. The way in which you rest is important. I hope you take in lots of sunlight and walk as much as you can."

October for me, always seems to mark the start of low mood winter. I can feel myself slipping back into depressive moods and accessing anxious thoughts. Discussing Crohn's and mental health is a little hard because it requires me to discuss emotions that are uncomfortable to dwell on, especially when I am actively trying to stay out of them. So I decided to leave my home and come and write this in the library. On the outside I may seem a little more together than I feel. But there are days when I want to crawl back into bed, and try to be a person on another day.

Indeed, last week I kept having some reoccurring worries as I was leaving my home: do I need the toilet, I need to toilet, if I go now I won't be ready in time, if I don't go there are no clean toilets around, thinking about this is making me late, being late is unprofessional. Before I found myself in a spiral of self criticism I just walked out the front door. I'll be late but I will be there, better to be productive for 1 hour, than stay in this spiral for 1 hour and do nothing

It felt like walking out in the middle of a fight. Before I could agonise with myself about my need for the toilet, I just left. I reminded myself, I would be back home soon with the comfort of my own home and toilet. If I needed the toilet that I could go to some public bathrooms, not ideal but also not the end of the world. I don't have to pause my whole day on an off chance.

These anxieties have followed me for a long time. Throwback to the days I would get dressed for uni lectures then stand at my front door paralysed by the fear and anxiety around feeling well enough to spend the whole day out. I wish back then, that I could have faced my fears head on in the way I am learning to now. 

CBT therapy has been extremely useful for me to manage my low mood and anxiety. The journey to finding the right type of help has been arduous and at times I did wonder if I would ever find something that could help me understand how I was feeling.

It's one thing to know that therapy, self-help books and meditation can improve your mental health. But it can feel like a waste of time, reading the books or attending therapy when they don't necessarily fit your situation. For every useful line of advice you find, you'll need to spend several hours reading through things that don't apply.

Or you spend 40 minutes of a 45 minute therapy session repeating something you had spent the entire last session discussing. How do you not get annoyed when your therapists only words of advice are "you are strong" "you should be kinder to yourself"? Internally I was yelling I already went over my fatigue being caused by Crohn's, and that that was making me depressed, which was making me stressed, which was causing my Crohn's to feel worse, which caused more fatigue. This conversation felt like an endless loop at one point with no hope in sight until I changed therapists and type of therapy.

It is not surprising that rates of depression are higher among patient with Crohn's disease and UC as compared to other disease and the general population.* The self help books I've tried don't write in the context of a pre-existing health conditions. And the approach I have encountered for those that do, has been to "eat yourself healthy," which can feel unhelpful when food triggers vary so widely between Crohn's patients.

I have felt hopeless and invalidated at times. What's the point of trying when nothing seems to be working right? Eating "healthy" doesn't help when it causes extremely painful bloating.

And what does getting mentally well even look like? Even when I am fine, I feel like I am biding my time for the other foot to drop, for another flare to happen?

It was timely then, that this year as I was finding myself slipping into my negative patterns, I found some things things that not only put words to how I was feeling, but made those therapy sessions make sense. A drama I had started by dropped earlier in the year: My Liberation Notes, I revisited on a whim. And a book I had reserved in the library 2 months earlier, becoming available: I want to die, but I want to teobokki by Baek Sehee.

I have found that my mental wellness journey is ongoing and evolving. I have found advice and support in conventional and unconventional places. A instagram reel recommendation for tv drama about healing, a book on Living with the Long term effects of Cancer*, a comment by a celebrity talking about their movie process, a doctor advised course of Vitamin D supplements, even in my own blog posts. 

I have made a note of anything that stood out to me so I could remember and use when I was finding life hard. Things to recentre and recite myself.

My liberation note was: I wish to be liberated from myself, to not internalise hurts and to get out of unhelpful patterns and spiral. To say what I need honestly and be more frank about what I am going through.

This line in Baek Sehee book reflects best how I am working on these things.

Whenever I feel weighed down by anger, sadness, irritation, or fear, I think to myself: I have to turn my gaze.

Crohn's does affect my mental health so I am working to build up my mental fortitude and find better coping methods for when things get hard or my pain become a challenge to manage. This year I am treading water to keep myself from feeling too low or stressed, an improvement on last year.

I hope one day I can meet October with a more hopeful outlook. Until then I will eat teobokki and continue to take small steps towards my own liberation.

~J~

*I originally picked this up because of its full title: Living with the Long-Term Effects of Cancer: Acknowledging Trauma and other Emotional Challenges