|Source || This quote applies to so many of my friends and I just love it!|
So I'm currently writing an essay and as we all know I have the concentration level of a 2 year old and I'm taking a little break and therefore thought it would be a opportune time to write to you guys.
Something I think about regularly and comes up a bit in my life is people understanding my situation and what that entails etc. My condition is quite rare what it stemmed from is not, having a hole in the heart is actually not very rare at all and certainly not within my family, having three though is unusual. Coming to terms with that, I would say, isn't all that hard. Then when I was diagnosed with Pulmonary Hypertension (PH) at 11 years old that was harder for me as it would be for anyone I think. I was scared, people were talking about transplant and drug trials and although I knew what they were talking about and was very happy that I wasn't kept in the dark about any of it, it was still very scary for 11 year old me. I actually burst into tears in a PE lesson at school after I had found out about it, one of the only times I have ever cried at school.
I went through my teenage years feeling very isolated in regards to my health I was only 1 of 22 kids at Great Ormand Street at the time with this condition and most of them were real kids, if you know what I mean they babies/toddlers, I had nobody my age to really speak to about it. The good thing was I had understanding friends who adapted to being with me and didn't push me physically and allowed me to be me. So I never felt like I was missing out I just never went totally in depth about what my condition was or how it affected me on a day to day basis and I was okay with that because I liked to pretend I was normal and that was good for me at that point in time because that is what I needed to get through school, to just be normal like everybody else. Although embarrassingly at my year 7 award ceremony I got a achievement award for overcoming the odds or whatever it was along with two other people in my year who had other medical issues too. It was really embarrassing lol.
Then we get out of teenage years and I was starting to get worse and I felt like I needed people who understood me and what I was going through a bit more. I was 17 and I was in college and although I still had my school friends college was different, these people didn't know me and trying to explain the array of issues I had going on with me would be a horribly lengthy task. One of my best friends is from college so I obviously got there in the end with a few people but what I'm trying to say is, it's SO hard trying to find people that really understand what you're going through and can relate. It was around this time that I discovered the power of social media.
Social media for those of us in my kind of predicament is paramount. I have a rare condition, so you're unlikely to find any-one who lives near you (although currently I do have one friend in the same town yey me) but social networks like Facebook and Twitter really help connect people and for people with PH we have our UK based organisation Pulmonary Hypertension Association (PHA) that organise events and promote our condition so we can meet each other and help each other. Since being put on list I've found these to be invaluable sources like the Heart Transplant Families group (the public and private group) because when it first happened I had so many questions that you sometimes don't want to ask your doctors and these have allowed me to talk to and meet people who have been through very similar situations and are going through them too and people who are the same age which make you feel less alone and seeing people who have been where you are and are where you will be in say 3 months times, 3 years time, 10 years time and so on is so motivating and inspiring and pushes you to go on because you can see where you could be or might be very soon.
The problem is sometimes you see people who you went to school with and they all have these full time jobs and are having kids, getting married, travelling the world, buying houses etc. Sometimes I worry that I'm being judged I'm 23 and still getting my degree which won't be finished until next year. I still work where I worked when I was 17 going on 18 and sometimes people I went to school with come in and I serve them and I just feel like I'm being judged for still being there. Thats why I think it's essential for people like me to have a network of people who can understand why you're doing what you're doing and get the situation you're in. My sister sometimes asks me how I can be friends with people who I met through these social media outlets and it really is because of this very reason I have an immediate connection with these people simply because of what we go through, have been through and will go through that I don't have with people who I normally interact with. You can talk about things that aren't generally socially acceptable to talk about. Also once you start talking to them you get to know them as people, not just their illness, and become genuine friends with them. Obviously you come across a few crazies as you do in day to day life but the good thing about Facebook and Twitter is you can simply press the block button, simples :D
A lot of these people are the reason you still have cool, calm and collected Stacie (with the occasional meltdown ;-) ). They help me answer some worrying questions I have, their positivity helps me to remain positive and there are my select few who I know I could ring day or night and they would be on the other end of the phone ready to help me if I needed it. I don't think there's too many people you could say that about in the world.
Chat soon guys