Up until my Crohn’s diagnosis just after my 30th birthday I was a relatively confident, independent, worldly woman. I was respected at work and was always busy socially. Whilst I never enjoyed being the centre of attention, I could hold my own in a conversation, I was active and adventurous, had a decent career, and a small close knit circle of friends.
Having IBD impacted all of that. As my symptoms worsened, many of the things that had been a breeze for me before, became a struggle. Going to work, socialising, even doing the grocery shopping. With the increasing urgent and frequent need to go to the toilet (and often not making it), came increasing insecurities and uncertainties.
I became much more introverted, anxious and less confident in many ways. I was isolated and scared. I avoided any situation in which I felt uncomfortable. On the really bad days, it caused extreme anxiety to leave the house. I was even petrified to take the garbage out or check the mail for fear I would need the toilet. I hated driving or catching public transport on my own. I became heavily reliant on my family. There is nothing wrong with asking for help or needing others, but when you are so used to being independent, this was a difficult thing for me to accept.
Financially, physically, personally, socially … my world changed. My self-esteem plummeted in more ways than one.
Financially I felt I wasn’t contributing as much as I should be. I’d left a relatively well paid full time job for a less stressful part time role much closer to home, which paid half the salary. I was only working 3 days a week. My share of the household income had reduced significantly, whilst the doctor’s bills continued to rise.
I had major hang-ups with my body and self-image. Rapid weight loss meant I had lost all my womanly curves but at the same time my puffy steroid cheeks made my head look like a marshmallow man! Half my clothes were hanging off me, my skin was atrocious and I had enough facial hair I was starting to feel like Mario from Super Mario Bros (okay, maybe that’s a bit of an exaggeration!). My hair was a mess as I was losing it in handfuls and hadn’t felt comfortable enough to go to the hairdresser in months. Perhaps I should have made more of an effort, but mostly I didn’t have the energy. Despite my partner Michael always telling me how beautiful I was, I didn’t feel it.
Some days I couldn’t even get out of bed. Michael would come home from a long day at the office and cook dinner, and my mum would go out and do our grocery shopping or clean our house. I felt useless and worthless.
Socially I tried to go out as much as I could, but I would knock back many invitations, or cancel at the last minute. Even when I did manage to get out, I wasn’t myself. I remember a New Year’s Eve party where I couldn’t concentrate enough or was too scared to start up a conversation with anyone, as I was worried I would need to rush to the toilet mid conversation and look rude. I would sit at home by myself on Saturday nights scrolling social media seeing everyone else out on the town. I never used to spend a Saturday night at home!
I had to remind myself, this wasn’t my fault. I had to go easy on myself. I stayed positive as much as I could (which was hard at times), but I knew I had to carry on and pull myself through. I had to make the most of my situation. Just because I wasn’t out socialising every weekend didn’t mean that I wasn’t doing something just as enjoyable and fulfilling. It may not be what I had expected to be doing, but I cherished those days at home snuggling with Michael watching a movie or doing a jigsaw with my mum.
At the same time, I knew I had to overcome my fears and anxieties as best I could. Somehow I had to claw back the confidence I continued to lose. It would have been easy to never go out and just stay at home where I was comfortable and felt safe, but that’s not what I wanted. I didn’t want to become a hermit. What’s the worst that can happen? Okay, maybe I will have an accident, and of course that isn’t fun and is embarrassing, but you deal with it. I once pooped myself in the car on the way to a friend’s grand final football party. We stopped at a nearby pub, I got my emergency bag from the back of the car (wet wipes, towel, change of clothes etc), and cleaned myself up. My sister helped me through all of this and could see how upset I was. She asked if I wanted to forget the party and we could just go home. The easy option would have been to say yes, but I didn’t. I picked myself up and carried on, and enjoyed the rest of my day.
Of course you’re not always going to be well enough to do this. You have to listen to your body and put your health first. When I was well enough though, I did everything I could to prepare for an outing and by attending support group meetings, and seeing a psychologist and hypnotherapist, I taught myself many different ways to help with getting out and about and improving my confidence and sense of security.
Eventually it came to the point of surgery, and with that can come a whole new set of challenges around confidence and self-image. I quite quickly put back on a lot of the weight I had lost. I was happy to have my curves back and knew I was healthier, but have to admit I struggled a bit seeing my body filling out again and no longer fitting into clothes, having become so used to my skinny frame.
Otherwise, I adjusted to being an Ostomate with relative ease. I think it would be quite different had I been younger. As an adolescent or even in my 20s, I wasn’t as comfortable in my own skin as I am now. I also imagine it would be different for those in a steady long term relationship as opposed to being single and out on the dating scene. I am speaking from my perspective as a 35 year old woman in a 15+ year relationship at the time of my surgery.
In many ways I feel even more confident now than I was prior to my diagnosis! Having Crohn’s helped me realise what is really important in life and not to worry so much about what others think. We are all going through something, and the important thing is to make the most of life with what we’ve got! I am more at ease and confident within myself and with my body, and grateful and proud of what it does for me. It’s almost as if my confidence and self-esteem have come full circle (and beyond)!
Of course I sometimes still struggle with confidence and body image issues, but as I would before, I do things to help me feel better and work through this. I talk about it with friends and family (or a psychologist or hypnotherapist). I look for the good in everything (including myself), and always remember I am not alone. We are all beautiful and worthy no matter what.
There is no way in the world I would have ever had the self-confidence to pose in my bikini or post a video of myself online for the world to see before I was diagnosed. Now, I’m not afraid or ashamed to get my body and my bag out! I may no longer have all my guts, but I am definitely a proud, more confident, self-assured, empowered and gutsy woman!
If you have struggled or are struggling with self-esteem, please do reach out to friends, family or a health care professional. I would love to hear your stories about how you have overcome confidence issues, particularly with IBD and ostomies. Remember, we are all beautiful in our own way and worthy no matter what.