National Teen Self-Esteem Month - Living with IBD as a teenager

Hello my Comfizz readers,

I hope you all had a good Bank Holiday weekend (if this applies to you!)

I feel like the last few months have been a blur to be honest & have all just merged into one with lockdown etc & here we are in May, crazy!

May is National Teen Self Esteem month. As I'm sure many of you can unfortunately relate to, having Inflammatory Bowel Disease (IBD) as anyone of any age, let alone being a teenager, definitely can come with impacts on self esteem to varying extents. That being said, there are thankfully a lot of treatments for IBD and coping mechanisms to put in place to help that, but still, it can be quite the minefield to work through when you're right in the midst of it.

"Tell me briefly how IBD impacted you as a child"

I have had a Crohn's Disease diagnosis since aged 7, but symptoms from much earlier. I had a lot of tests, procedures & treatments throughout my school years which definitely stopped me from living more of a "normal" life & meant that I often missed out on what those around me were doing. I then had my surgery to give me my permanent ileostomy bag at 19, so it's safe to say my teenage years were definitely impacted by Crohn's in so many ways, in today's blog addressing the impact on my self esteem & things that I'd have told my teenage self back then knowing what I know now of myself, living with with a chronic illness and the world around me.

Having Bowel Disease impacted me from as young as I can remember pretty much, then progressed into my childhood & often was very apparent to me in my daily life to the point where it became impossible not to feel as if it defined me. I'd sit and wonder when I was younger especially what I had done wrong which meant I couldn't be like the other children or why I couldn't just pull myself together & stop being scared of going on school trips because of tummy ache, not wanting to eat & being worried I'd mess myself right in front of everyone.

I avoided so many things out of fear of embarrassment and not feeling up to actually doing things from quite a young age & found it easier to be at home where I felt comfortable, safe & the things I couldn't control such as my stomach were at least more within an environment I knew & I could have some control over. I always felt cold, weak, nauseous, insecure & used to worry about my weight especially compared to everyone else & get mad with myself that it would be an emotional mountain to climb just to eat the tiniest bit of food.

Going through the teenage years with IBD

My teenage years weren't much easier. I thankfully had more treatment options but became heavily reliant on steroids to a point where if I'd even taper off 5mg, my body would be flung back into a huge Crohn's flare. I depended on them to even grasp desperately at some sense of normality in my teenage years. 

Steroids came with so many side effects but they were the only thing that seemed to kick my flares into touch. The more I became reliant upon them though, the higher the dose I needed and it got to a point where oral steroids were becoming quite ineffective and the only way to calm down an angry flare was to have steroids via intravenous (IV) drip. My face would swell often on steroids (see the photo above) & it would really destroy my confidence.

When I was treated with Infliximab (also known as Remicade) via IV in the year before my surgery, it improved my self esteem & how I felt about myself slightly as it gave me bigger boobs, curves & a figure! I had been so used to weighing nothing & feeling as if I was nothing but straight up & down to look at that it actually did work wonders for my confidence. This in turn definitely helped my anxiety surrounding IBD & helped with my bowel control & I found I did manage to do more whilst on this treatment before it started having some pretty painful side effects such as sore joints and muscles. When it got into the later doses of Infliximab, my Mum had to lift me in and out the bath & help me to get dressed etc as the pain was horrendous. 

Dealing with IBD at school

School definitely wasn't a place where I felt comfortable when my IBD was bad. I often had to go spend time at the school "health point" to have supplement drinks as I was struggling to eat, along with other medication & I often ended up there from feeling weak & dizzy from not being able to eat. 

Carrying round a spare pair of knickers and trousers with baby wipes in a carrier bag inside my school bag became something I relied upon anxiety wise especially & I'd ensure I had at least 2-3 back up body sprays for when I absolutely had to use the toilet at school.

Using the toilet at school was such a challenge for me mentally, but often I wasn't left with a choice if I didn't want to mess myself instead where I could help it. I remember being sat on the toilet often praying nobody would come in, or flushing the toilet or making myself cough if people were around, or waiting for the hand dryer to turn on before I let myself go. This in itself was agonising as I would physically sit and hold my breath and squeeze my bum muscles to stop myself going, which didn't work wonders for my narrowing I had in my colon, surprisingly!

I daren't pass wind at school, so often I'd give myself agonising stomach ache from holding it in all day if I couldn't get to a toilet that I'd be doubled over in my bed all night in agony once I got home. There were frequently times where I remember walking back from secondary school and literally letting the wind rush out of me (when I wasn't at danger of diarrhoea - this caught me out a few times) because I couldn't hold it in any longer & thankfully there was plenty of traffic & noise around to distract anyone from the noises that followed... and nothing pointing towards me to say that the smell was coming from me!

Self esteem & pushing past the embarrassment I felt

How I felt towards myself was definitely tested by IBD. It was made a lot harder & went hand in hand with my physical health. When I felt rubbish physically, I often felt as bad, if not worse, mentally. 

When I felt ill, putting effort into how I dressed understandably often went out the window, then this had a knock on effect to my mental health & the relationship I had with myself. The clothes I'd wear when I was really poorly were often loose fit and oversized clothes, which made me feel even tinier and underweight. I then had little control over how the world saw me. I wasn't showing the world the Amy I wanted to be. I wanted to show up and dress up every day but often IBD had other ideas.

It isn't uncommon for your teenage years to obviously be a time where your self esteem is tested anyway & you constantly compare yourself to those around you & wonder if you'd be a better friend or appeal more to others if you were different. In my case, I wondered if my IBD actually made me unappealing, a let down & often told myself that people were better off without me.

Looking back on this now, I would definitely say that if anything my IBD actually makes me a better person, a better friend and more attractive to the right person. 

I've also got past the point 95% of the time of embarrassment. Sure, I have my bad days where I'd like to just part with my stoma bag & my illness for a while but then I remind myself that my stoma bag saved me. My illness or my stoma don't define me & it's fact that even the Queen poos, and nobody's poo is meant to smell of roses, contrary to the embarrassment we've all almost been accustomed to feel if we even dare talk about our bowel habits. It's perfectly natural and needed to stay alive! 

Where I am now

I am in the best place with my self esteem and body confidence that I have ever been. I am proud of my body, my stoma bag and my scars. My stoma bag doesn't define me... I own it, it doesn't own me. I am so thankful for it & the fact that it saved my life. To find more out about my body confidence journey, please head over to my instagram.

Self-esteem pointers

Throwback to being on location with Comfizz! ^^

I thought I'd finish this post with some pointers you might want to try or things you might want to consider when struggling. It is perfectly human to struggle, may I add, and bad days don't automatically mean a bad life. It's okay to admit that IBD sucks, because at times it absolutely does. Nobody wakes up and wishes they had it.

- Try to practice positive self talk over negative chitter chatter.

- Make a list of things that are bothering you (IBD included) then see if you can write down some possible solutions to try. There will be some things that need a lot of patience and work, medical advice, and several tries, but it's worth a try.

- Surround yourself with the people who love you for who you are - illness and all. There is not much worse for your self esteem than being around people who make you feel as if you aren't enough.

- Even though you may have IBD, your body is still fighting your corner. Every little cell in your body is fighting to keep you alive, even if some of them are on the rampage!

- Engage in an online support group. Online is great when you struggle to get out of the house & speaking to people who get it definitely enables you to feel less alone which in turn enhances your relationship with yourself if you feel more understood.

- Remember that your body is there to help you, not hinder you. IBD is just a part of you, even when it feels all consuming. You are not your illness. There are times where you do feel like you are your illness and understandably so, but try & cling onto the things that make you you. If you can't get to a gig, for example, project online videos such as concerts onto your bedroom wall, get cosy and warm and listen to music that way. Remember, one day you will get there in person! Use that as your focus and a goal to work towards.

- Make a list about 5 things that you like about yourself that aren't necessarily to do with appearance. Make it personality based.

- Have a shower & freshen up even if you barely have the energy to stand... have a sit down shower - this is so underrated & makes such a difference for me. Exfoliating, shaving my legs, having some nice candles on, then moisturising after the bath & getting in some cosy pyjamas really boosts my self esteem as it makes me feel good about myself and that I deserve to look after myself...

As do you, never forget it!

Until next time,