Molly was diagnosed with Crohn’s age 12. She took 4 years out of school due to poor health, but miraculously I re-joined her year group just in time to do my GCSE’s. Enabling her to progress to college. She became particularly unwell again in college. Having to extend her studies to 3 years, instead of the usual 2. She then had a year out to have a stoma formed. She went to university for 3 years to become a Paediatric Nurse. Unfortunately, it didn’t go to plan and she had to extend by a few months to have another bowel resection. Currently, Molly works in the Child and Adolescent Mental Health Service. Last year she had a stoma refashioning and resection. Here is her story.
What an honour to be able to have my words read by so many other awesome chronic illness, IBD and/or stoma warriors! Hi – my name is Molly and I am 28 years old from Somerset. I love marmite, dogs, Strictly Come Dancing, my family and being able to live in a beautiful rural part of the world. I have also had Crohn’s disease for 16 years and a permanent colostomy called Neville for 8 years.
My life has been an adventure to say the least! You name a medication or surgery, and chances are I’ve had it. If my CV could consist of completed medical procedures, I’d be called an over-achiever!
Throughout all the above events in my life, I was pill-popping and being intravenously infused with lots of various immunosuppressants, steroids and biological therapies to try to gain control over my Crohn’s. It worked on/off. Anyone with IBD will appreciate the roller-coaster that flare-ups entail.
What I would like to do is reflect on the lessons I have learnt so far in my life:
- Never take health for granted.
Health should be everyone’s number 1 priority. As one quote states – ‘health is a crown that the healthy wear but only the sick can see’. In the current COVID-19 pandemic, everyone is experiencing a heightened sense of their own mortality and vulnerability. IBD/chronic health pros experience this feeling frequently with musings such as ‘What long-term effects will my current/past medications/surgeries have on my health?’ Decisions that were made when we were newly diagnosed could potentially impact our future health outcomes.
- Trust yourself.
It is you and only you who will be dealing with your IBD/chronic illness for life. I vividly recall one night over a Christmas period in hospital, I was the only one in the bay and I heard hospital volunteers singing carols. That memory clings to me; a moment when I realised I was on my own – not alone (my family are amazing) but that ultimately I would be the one experiencing this condition while the rest of the world keeps on spinning. You have to be your own advocate and I had to find my voice when transitioning to adult care. My medical team take me seriously when I say ‘something isn’t right’.
- Find your people.
I missed 4 years in school from Year 6 – Year 10. I never experienced the stage of relying on friends rather than family. Only fairly recently I realised that this has impacted on my social interactions even to this current day. I struggled to be open and vulnerable with people outside of my immediate family. Why would I need to be when my entire world was my family when I was house-bound for 4 years? I don’t like sympathy. But I get frustrated when I do tell people about my health story and don’t get the reaction and true understanding I feel it deserves. Therefore I continue to be selective with sharing my story. This is a work in progress.
- There is no set timeline in life.
As humans I think we have an innate fear of missing out or not being at the same life stage as others. I know I do. That old classic quote – comparison is the thief of joy – is pretty accurate! I have vast experience of being behind my peers in the ‘norms’ of life – when most of my contemporaries were going out to parties, I was home in my ‘safe bubble’, too ill to venture out. I missed my graduation, instead having to extend my degree due to my unreliable gastrointestinal tract and immune system! But I have learnt – that this is ok. The only competition should be with yourself and the person you were yesterday. I’ve had life experiences, different to my peers, that are immeasurable in terms of what they have taught me. The feeling of life being paused, that the world is feeling at the moment due to Covid-19, is not new to us – the chronic illness gang!
- Our bodies are maps.
I heard a quote about ‘our body being a map of our life’ and I thought ‘yes’! That really connected with me. I have scars on my hands from numerous cannulas, scars on my tummy from all the resections, I am the proud owner of a ‘barbie butt’ and I have my friend Neville (stoma) always with me wherever I go. My body is not ‘typical’ or the social norm of ‘beautiful’ that the media portray. But it sure isn’t boring. It has lumps, bumps, moles and holes – that show the battles I have won during my 28 years on this planet. My stoma operation, age 19, was planned so I had time to mentally prepare myself. However it still took time and I am continuing to learn to live with Neville. I do not regret having him as he gave me the chance at ‘living life’ rather than ‘barely surviving’.
- We are bloody resilient!
I wouldn’t change having Crohn’s or my stoma. That might sound bizarre to some. I don’t know who I would be without IBD. It’s given me an abundance of empathy, shaped my career path and shown me how unbelievably resilient any IBD/chronic illness superstar has to be!