I always knew adult services was going to be different. I expected that adult services was not going to be as personalised, patient focused and individualistic as children's services. However, I was always positive that adult services would make me feel comfortable. This is true, my new adult consultant was lovely and she was hand picked my paediatrician as someone who he recognised as being someone who would be able to give the same level of care and attention he did.
Everything is absolutely fine with my new consultant, I would have 6 monthly check ups with her. She is friendly, talkative and showed interest in my academic career, lifestyle as well as my health. This made me feel very comfortable with here and helped build a bond in which I could talk to her about any issues I was facing. She always left enough time for appointments so I felt there was time to discuss any outstanding issues as well as new issues.
However, what I forgot about adult services, as with any service is that when going for appointments, you stand the chance of seeing your main consultant or someone else from their team. That was what happened to me at my most recent appointment. Unfortunately, I had to reschedule my most recent appointment due to my University exams. Therefore, the new date I got fell on a day in which my consultant doesn't typically do clinics. As such, I was allocated to one of her registrars from her team. He was perfectly lovely, he was very professional and treated me like an adult. So no complaints on that front.
However, what came across immediately from the moment I was invited into the consultation room was his tone and attitude. He spoke very quickly, and almost left no time for me to interrupt or cut in. I felt as though he was rushing through his patients, which I am sure wasn't really the case. This was just the impression that I got. I felt like I was taking up his time if I wanted to bring up something new, or if I wanted to discuss something more in detail, which is definitely how a patient should NOT be made to feel. I feel that, it may have been his naturally way of speaking but that can be rather off putting for some patients. Definitely was for me. The tone a Doctor sets when they start a conversation with you sets how the consultation goes. If the Doctor is open, friendly and the conversation flows naturally then you are more likely as a patient to be open and discuss matters. However, if a Doctors tone is more quick and fast flowing and seems to not give you as much chance to speak as you would like, you rarely challenge it and you sit quietly and listen and answer when asked. Much like in a classroom. This is not what a consultation should be like.
I am not saying that he was wrong in that particular consultation, I would merely suggest that when speaking to patients Doctors should speak slowly and try to think how the patient is feeling. Especially the younger patients, having moved to adult services relatively recently, I am not used to having to ever ask a Doctor to slow down or feeling like I needed to interrupt in order to get my point across but in this particular consultation I felt like I needed to. While I may have the courage to do that, some other patients may not and that is not good! Obviously on that day, I had a bad experience. However, it has made me think? What if there are more Doctors who are like that, who unintentionally make their patients feel uncomfortable and make it more difficult for their patients to speak up? In some cases, patients rely more on their consultants than on their GPs, so if you can't talk to your consultant (in a situation like this) than who can you speak to?
As I lay here, in pain and in my thoughts, I wonder, what makes me who I am?
Personality, lifestyles, and ambitions are traditionally attributed towards, amongst other things, to genetics, environment, and life experiences. However, what if my life experiences are my environment is my genetics. What if they are all the same and are all affected by one overarching thing; my medical condition.
How would I be different if I was born without a genetic condition? How would my life be different? Would I still have the same drive, same passion, same enthusiasm for life that I do now? These are the questions, which on nights I cannot sleep due to a variety of reasons, which weigh heavily on my mind.
I have contemplated a past and present if my life was different. I believe that without my condition my life course would have taken a different path. Up until university, my life has always been one that has been sheltered and different, be it through personal circumstances or issues with societal infrastructure. I was an individual who had dual characteristics, one who was rather shy and somewhat reclusive spending my breaks and lunches indoors as I was always terrified of the outside world. The world for me held dangers, which I could not cope with. I was always accompanied by an adult in whatever activity I did, and that made me feel rather sheltered. As such, I always got on better it seemed with adults. I bonded with adults more than I did with my peers. Therefore, to them I seemed mature, confident, and outspoken. However, on the inside I was a meek boy who was putting on an act for the world. A face of bravery to a world, which I felt, I was being hard done by.
Up until I reached sixth form, friendships for me were something of a passing fancy. I was never in school for long enough to make and sustain friendships, and before the emerging popularity of Facebook, staying in contact with people was a lot more difficult. I was like a ghost, fleeting in and out without leaving a mark or trail. Friendships were made for me of people I met through classes rather than through being a sociable individual. I was never the kid that was invited to parties, and I was never the one who was popular. When I entered secondary school, the bullying I experienced was silent but everywhere. My peers did not understand what my condition was and therefore did not understand why I was treated differently. I got teased, my wheelchair got kicked, I was seen more as a play thing than as an individual, arguments got started in class because I was allowed to leave lessons a bit earlier and come to class a bit later in order to avoid the rush of two thousand students in the corridors. There seemed to be an air of animosity in my peer group, while it was only a small majority that made me feel this, it was enough. I was an outsider. That was something I accepted from a young age.
I was different. I spent a lot of time in hospital; my environment was in the world of the adults. I never felt like I belonged in the world of my peers. When you are diagnosed with a medical condition, especially a physical condition like mine, it makes you grow up. You have to deal with the problems it brings with it and you need to realise the implications and limitations it brings with it. Even though I was diagnosed with my condition when I was two years old, I do not think I really fully understood the full implications of my condition until I was sixteen. I would be lying to myself if I said that all this dawning on me did not hurt.
When I was younger, I would be in hospital for periods between six months to a year, with no visitors beyond my parents, and my family I would feel hurt. I often questioned why must my life be like this? I had dark times, where I barely spoke and all I did was eat and sleep. I became in life what I was outside, a recluse. The thought of going back to school frightened me because I was being thrown back into an environment where I felt I did not belong. In the time, I spent in hospital or at home recovering, I would happily spend that time doing my schoolwork and getting good grades and marks. I felt school was a place where there was unnecessary danger. Apart from getting an education and grades, I felt there was nothing for me at school. I got pleasure from working and from being a good student. It made my life feel worthwhile. It made me feel as though my life had a purpose.
When you spend that much time with your thoughts, and you get a chance to do research on other people with your condition you get to see how different peoples lives are with my condition. Some barely make it past childbirth; some live a life but are not able to live a full life due to shorter life expectancies. I wanted that not be my case, my story. There was only one thing I could do and do well and that was study. Therefore, I devoted my life to achievements and grades because that to me at the time showed success. How wrong I was! However, at the time that is all I cared about. Do whatever it took to get the grades, because from that I got my worth. I was able to show I was able to do something with my life and not be 'disabled'. Having thought more about this period of my life, I realise how self - centred I was. How I cared only about doing what was best for me or what I thought was best for me. Up until I was 16/17 I kept to that reclusive state, I stayed myself to myself because I felt that was the only way to succeed and to stay safe.
My life became this prison into which I patrolled, never stepping outside the gates. Never daring to overstep the boundaries. I never challenged myself in other way but academically. I was always the good boy, never being one who was told off, never the one who forgot his books or equipment. The boy who had everything and was ready to face any academic challenge. I was the one who was able to fend off sanctions and detentions for 7 years, until one fateful day on the last day of year 11. The most excitement my life had at that time was the possibility of switching schools to go to a different sixth form college in order to help me excel further academically. I was doing what was making me happy, because with my condition I thought that was the only thing I could do in my life in a way that was safe for me to achieve happiness.
So what if my life wasn't like this? What if my life wasn't encased in a self constructed prison? What if I was an able-bodied person? Would I be as academically successful? Would I have had the resilience and drive to keep pushing to get the best grades, to get into the best schools and to get into the best university? Maybe, maybe not.
If I was an able-bodied person, would I have been happier as a teen? Would I have had more friends in my peer group? Would I have had exposure to a different environment that changed the person I am now? Would I have begun smoking at an earlier age? Drinking at an earlier age? Would I have rebelled against the system like some of my peers did, against the futility of the grade system and that value is based on grades and how well you do in school and university? Maybe, Maybe not.
Whatever may have happened, whatever ifs come into my head, what I know for certain is what happened more recently, what happened in the last 4 years of my life.
I see sixth form as a real turning point for me. As I mentioned before, I did not realise the full implications of my condition until I was 16, which was the around about the time I transitioned in more ways than one. It was the time when I started to realise my happiness did not come with just grades, my life did not revolve around the grades, it started to dawn on me while grades were important the people around me were equally if not more important in my life. My friends, who had been 'passing fancies' in my earlier teens became people I could come to depend on and they would come to depend on me. I was able to, with the help of some adults in my life, to start exploring the things, which I had missed out on when I was younger. I was able to go to parties, I was becoming more sociable, I was becoming the things I never thought I could be because of my condition. 16 was the year I started to become more about Thines rather than about the Osteogenesis Imperfecta, which had ruled my life until then. My carers while still present, were able to to take a step back allowing me to be who I wanted to be without being who they thought I was.
16 was when I started to enjoy life and I have not stopped since. I have had the chance to take part in things and help in things that I never thought were possible. I am able to partake in things I thought were impossible for someone like me. The barriers that used to be in place were slowly falling away because I wanted them to. I wanted to make certain lifestyle changes, I wanted to experiment, and it was good. I cannot say I have never made mistakes since that point; of course, I have, but relish them. I relish the opportunity to do things and make mistakes, I bounce at the chance to do things, which I thought were not something I could do or should do simply because I thought it might be a hindrance to my health. I was keeping myself back and it was not something I wanted to do any more. I grasped every opportunity that I got because I realised there was no harm in trying. I had nothing to lose and everything to gain. When I said earlier grades = success = happiness, I am wrong what I do now is happiness and I have been doing for the past four years is happiness. I am the most happy now when I am with my friends, friends who care, friends who matter to me and friends above all are the best of me. I used to think I did not belong in a place with my peers, but I could not be more wrong. Without them and their constant encouragement I would be no one, it took me a long time to realise that but what a time to realise it?
This is a collection of articles, news, videos which I have come across and thought it is worth sharing and recording for future reference. The topics of these posts will vary and there really is no theme, apart from the fact I find them to be thought provoking.