I was having a conversation with Rachel the other day about being chronically ill from a young age and how it affects you as an adult. Most people may not realise that it can severely affect your personality and how you act around others but it really does. As well as my own experiences I have asked 3 other bloggers from different backgrounds what it has been like for them growing up chronically sick and how it has affected them as an adult.
I have been from a young age as my one of my Dad’s friends put it a wise soul; if it was a subject I was passionate about I could talk about things from an older perspective – don’t get me wrong I was still very childlike in other respects, I still am and this is my point. But I always enjoyed spending time with my Dad and his friends and joining in on their conversations. The years I spent in hospital when I got moved up to the adult wards at 17 meant I was spending more time around adults than I was people my own age and this ultimately allowed me to talk to anyone as I knew a little bit about most things; I actually put this down to be one of the main reasons I am good at my job. Not to mention the multi disciplinary teams I was under allowed me to talk in a more adult manner even though inside I was still a child who felt lost and caged.
You lose a lot of the time that would be spent just being a kid where you push boundaries and learn who you are as a person. Not that I missed out on the rite of passage that is drinking in the park! I find that this has left me very naive and I haven’t got a filter when I talk to people and end up oversharing then fall into the vicious cycle of over thinking it and hating myself when I get home. I can come across very childlike because I just don’t know how to deal with social situations, be it how to act or what to say. Even though I am more comfortable in hospital settings than someone my age should be sometimes I still feel like I want my Mam to come with me and then even though I haven’t lived with her for nearly 15 years I still find myself looking at her for help with expressing what things are and have been like, it is the same when I bring 00Steve along. I often like it to when your child comes home from school and you ask them what they have done and their response is “I don’t remember”, I look to others to jog my memory and say what it is like as an outsider especially since I can cope with a hell of a lot of pain I often don’t really think about what is going on and how it has been affecting me.
I also feel so much younger than I am mentally because I forget just how much time has passed and how much of that was spent being unable to live like a normal teenager. At times I also think how healthier would I have been if I hadn’t been so stroppy and vain when I had my first surgery. My life might have been different if I had just accepted that temporary ileostomy, I do however for the most part love my life. I have amazing family, friends and enjoy both my paid day job and my blogging/advocacy. Growing up though I still worked, attempted a social life and as I didn’t know any different when I look back it shows just how resilient I have been and how I was determined to live a “normal” life, I also like to think I have a completely enhanced ability when it comes to empathy and appreciation (even if it has taken me years to show it) because of just what I have been through to get where I am now.
Being completely honest it robbed a lot of my school time and time with friends. It has put a strain on my relationship with my family and obviously lost a lot of friendships. Even now i cant make up for that lost time that was taken being ill as a teen and early adult!Then the anxiety of wondering do people actually like me and constantly second thinking what are they saying about me I bet they find me annoying. I also pick people up wrong. Its gotten to the point now if someone says oh you look well so you must be doing better is so far fetched from the truth it just deflates me. As you grow with this illness you no longer have things in common with the people around you and loose contact and things to talk about as life revolves around hospital appointments and has done since I was 14/15. At school I would be teased where everyone tried to tell me I was pregnant because I had bloated so much from severe constipation. I then went to the doctor and was put onto the mini pill in hope that I could prove everyone wrong and then my mum found out and that didn’t go down so well! At a young age I did try to keep up with friends by going out at the weekends or having house parties or going to nightclubs but it made me so severely ill that I just couldn’t do it anymore and I was then given hassle that I couldn’t be that unwell or poorly if I was able to go out drinking. Then I was bullied terribly for having moonface by people who were once my friends, that illness had divided us of. This now has an impact on my life today as an adult in terms of are people always going to find something that I do and say “she can’t be that unwell if she’s doing this or that” it’s a constant anxiety of being judged. – Alannah https://alannahjaynesblog.com/
I was born with an imperforate anus. (Born with no opening of the bottom) and therefore I had to have urgent surgery at one hour old and I was given a colostomy. Even though I was full term baby I only weighed just over 1lb. As you can imagine surgery on that size of a baby was very difficult and my parents were told to expect the worse within 24 hrs. This was back in 1972 and I am pleased to say I am here to tell the story.
My first recollection as a child must have been around the age of 5, I was in a wheelchair and still in nappies. This to me was normal as some my peers also had wheelchairs, yet some could walk. What I couldn’t understand was why my friends could go to the toilet the normal way but I couldn’t. My parents and school tried to toilet train me for nearly 18 months but I had no control what’s so ever and this was starting to frustrate me, and I started to feel different to everyone else.
So I had surgery and after just 2 weeks I returned to school. I didn’t know what would happen about my stoma care and my mum had to be with me for the first week and train 2 members of staff how to change the bag and care for the skin. The 2nd week back at school was very scary for me… I didn’t have mum and I was left in the care of 2 members of staff. This is when I started to feel different to everyone else.
I was then told it wasn’t my problem to worry about and that the 2 members of staff would be in full charge of it. I was also told it would be in my best interests not to tell anyone about my bag and keep it a secret. Most of my school life I felt like I was in this bubble. Having this secret and not being able to tell anyone even though all my other peers had disabilities had a huge impact later in life.
It was when I was in my teens I had to start and think about my future away from school; all I would think was how would I cope outside this bubble in the real world. I just didn’t have any answers. I was also thinking about my GCSE exams. I remember clearly one teacher saying those weren’t important to me because of all my health issues I probably wouldn’t be able to get a job and if I did then I wouldn’t last in it. I was like wow thanks for the vote of confidence.
Exams finished I was then considering my options for life outside this bubble and into the real world. I had ambitions, I wanted to be like any other person leaving school – going to college then getting a job. I went to college to study Business and Finance. This is where I had the dilemma how would I cope with my stoma care?
I had to delay starting college by a week and on my first day there it was very scary. How would all the other students treat me, they had already known each other for a week now and had made friendships. I arrived and the tutor told me to sit in the front row. She was aware about my medical background; I had to introduce myself to the rest of the students and my education background. All I basically said that I had come from a school for people with disabilities and this was a whole new experience for me being in main stream education; the students told me not to worry we will make sure your safe and in fairness they did look out for me.So after a studying a one year course in Business and Finance which I passed with flying colours I then had to decide my future once again with having a job. Keeping my stoma a secret was beginning to become harder. If I was having a problem with my stoma, I would have to make an excuse that I wasn’t feel good and needed to go home and get my medication. But I could only do that for so long. Due to the flexible hours I worked I would use that time to go out for 30 minutes and come back. That was fine, but I was starting to owe many hours of working time and it was getting out of control. I would work on weekends to make the time up. I did go on to have a great carer and making many friends over the 10 years I was in local government. Although I had to retire on ill health I still have friends from there I meet regularly with.
As I was in my mid 20’s I was often asked why I wasn’t in any relationships. I just kept laughing it off saying I hadn’t met the right person for me yet. But in reality I was scared; I had so many surgeries as a child and I have scars all over my body, my spine is a strange shape due to scoliosis and the 3 surgeries I had on it, then finally there was my stoma. All I thought was because of my body image who would want to go out on a date with me and on top of that, how on earth would I explain I have a stoma that I need help with the day to day management of it. No way would anyone want to date me. This has had a huge effect on me right up until this very day. I am now in my late 40s and think that my time has passed in meeting someone. Even if that girl had decided to go out with me and it didn’t work out then I would have had the confidence to try again.
Where does that leave me now? I am now more open about my life with a stoma thanks to social media groups. I have met some absolutely truly and amazing friends who have helped me come out of my shell in the past 2 years. As for relationships; I worry about that someone may think I’m actually looking for a carer rather than love, yet these are two separate issues. I can have carers in to help with my stoma care and if I find a relationship then that is something they don’t even have to think about and see me for who I am and not what I have. Graham https://g-mansbagforlife.blogspot.com/2018/05/my-background.html
I was diagnosed with Rheumatoid Arthritis aged fifteen months, so have been chronically ill for as long as I remember. Since then, I have also been diagnosed with numerous other health problems including Crohn’s Disease. I have had to have a hip replacement aged 23 and now have an ileostomy which was created almost three years ago.Growing up with a chronic illnesses has definitely shaped me and my personality. Having my mum who was such as positive role model for me, and a great medical team, I was given the chance to advocate for myself and learn a lot about my disease from a young age. I feel that understanding your disease is so important when you are chronically ill and goes a long way to helping with finding appropriate treatments and ways of living.I think I have a stubborn streak, which can be a blessing at times and sometimes not so much! I have always been very determined to enjoy life as fully as possible, despite my health problems. Sometimes this can result in me pushing myself too much and actually making issues worse.I think my attitude is definitely one of a cup half full person. I have been ill all my life, and will be forever. I don’t feel that pitying myself, moaning about the hardships I face or giving up on life will help me at all – in fact I would have a very miserable existence. Obviously, there are times I am poorly and will allow myself a moan – what we have to face is really, really hard at times. I just try to not let it take over me for long. I find this is one of the major differences between being diagnosed as a child and being diagnosed later in life. More of the people who are diagnosed as adults seem to feel more hard done to. They know what they could do, and miss that life before becoming poorly. I never had a life before chronic illness so it has always been my normal, and I just get on with it. Natalie http://www.thespooniemummy.com
Were you sick as a child growing up? Did it affect the life you now lead as an adult?