I have been poorly for 3 years, but it has only really become apparent in the last 6 months that my life has really changed. Your probably thinking, how it took me that long to realise? I think it’s because when you are diagnosed with any form of illness that changes your lifestyle, is hard to accept and even harder to try and adapt your world to fit it.
I feel like my life stopped 3 years ago, the day I started showing symptoms, and it’s like I am still waiting for it to kick start again, I’m in limbo, in a grey area that seems never ending. Whilst I have been fighting Gastroparesis, it has become my soul focus and some days I feel like GP Defines who I am, and somewhere along the way, everyone around me has moved forward in their lives. They have grown, got new jobs, moved house, had kids and continued to move on as their world evolves
You are always told that some people come into your life and stay there forever; they become a part of who you are that kind of relationship is so rare. Then there are also the people that come and go from your heart as you grow and you change people from school, classmates from college, people you worked with. If you look at the different times in your life and the things that mattered to you at the time, your friends usually have the same interests. If you liked ballet when you were a little girl you met other girls that went to the ballet, if you played football, you had friends you met on the football team. I obviously know that this is a huge generalisation and there are often exceptions to the rule but you tend to stay within your comfort zone and find friends who are similar to you.
Before I became poorly , I was massively outgoing , worked all the hours god sent in the pubs and had a social life Kim Kardashian would have envied (you know she couldn’t pull of a feeding tube quite like I can!) I was so lucky and had always had 4 or 5 really close girlfriends. We all got together quite regularly and got on like a house on fire, even though they came from all different walks of life, we all liked to go out and have a good time if I’m honest. We were often seen carrying each other through the Gay Village, ordering an entire kebab shop of food and singing in taxis on a weekend. Honestly back then I thought that we would all be friends forever, you always do at the time you can’t imagine them not being around. When I was talking to my mum about writing this blog (my mum’s my best friend, by the way, so you’ll be hearing lots about her) I realised that when people say relationships take work, people often forget that that includes friendships too. My mum and I speak every day usually more than once, the summer holidays is my favourite time of year, we talk all the time, the wife hates it because of the phone bill rockets! Life can sweep you away with jobs and kids and family, it can seem like there aren’t enough hours in the day, and you often think I really should ring... Oh, ill do it tomorrow, and so the cycle begins. And this happens in all friendships, not just those affected by illness.
So you already have life, time and phone bills to contend with, and then add in Gastroparesis. From my point of view as the patient my world has just been turned upside down, and like I said earlier it literally took over my life. I became so wrapped up in tube feeding, hospital appointments, pain management and everything else that changed that I forgot that the world was outside of my bedroom and the hospital. Every day became a battle, that I became consumed with fighting, as the months went by and I got sicker and sicker, and more and more tired, I stopped going out, answering my phone and just switched off the outside world to try and make sense of this new world I wanted to escape.
From my friends point of view, not that I can understand it fully, but I am trying! I had just suddenly changed. I didn’t answer my phone, was constantly cancelling plans and really couldn’t talk about anything but medical stuff. I stopped drinking about 2 years ago and can honestly say I really don’t miss it, but I miss bonding with my friends and going out clubbing and dancing is what all 23 year old girls want to do. I became quiet and tired all the time and quite grouchy too for a while. I must have seemed so miserable to them, but like my mum always says the people stood around me now are the people that really really love me for exactly who I am, ill or not! I didn’t want to bore anyone talking about Gastroparesis all the time, but I didn’t have anything else to talk about so I just didn’t really talk allot.
It was about 7 or 8 months in that my friends started to drop away, when I first got sick, everyone would ring me all the time and come and see me. People sent flowers and cards, basically I was the centre of attention, don’t judge me, I deserved it! Only kidding, the flowers were nice! But after a few months when people started to realise that this new addition to my life wasn’t going anywhere, this was even further cemented when I was diagnosed and told that there wasn’t a cure. I think that some people stopped ringing because they thought they were bothering me, or that I wouldn’t want to hear them complain about their problems compared to mine. Now I don’t know about you lot but this annoys me even more! I like hearing about other lives and other problems it makes me forget my own and I feel more connected. Yes sometimes I get jealous, I’m not going to lie, I’m human and I’ll be honest sometimes when I see people on FB moaning about a cold or a shit day at work, I think, you don’t know what shit is sunshine, but the I remember how lucky I actually am, and that there is always someone worse off than me. A wise woman once said “if everybody put their troubles in the middle of a room, you would pick your own back out”
After about 18 months I was so lonely and so overwhelmed with everything going on in my life that I decided to start using the support groups on FB, it was truly the best thing I could have done. I only read at first, and it was like I was reading about my own life. After nearly 2 years of saying Gastroparesis and getting blank looks on faces from doctors to waitresses, I was just overjoyed that someone else knew what it was. I myself had never heard of GP until I myself got it, so I cant ever blame people, but I can promise you it’s not as rare as you would think. I have met some of the most amazing women in the past year, who not only deal with being sick, they have full time jobs, raise families, fight insurance companies and still manage to support each other. I have gotten more advice and support from those women that any doctor, and probably most of my friends.
The problem was most of the groups were American, and not in the UK. I had only spoken to one other girl with GP who I knew from college and speaking to her was like a huge turning point. I finally after months of feeling completely alone, found someone who really understood what I had been going through. The first time we spoke we talked for over an hour and were tripping over ourselves because we couldn’t talk fast enough. After a few more months I set up a UK page with G-PACT (an American non profit organisation) and it was then, when I started talking to all these wonderful ladies on the phone and online. Forming friendships which came about from having GP and some have grown into true friendships.
Please don’t misunderstand me; my best friend has been my best friend for over a decade. She has impacted on my life so deeply, I know that no matter what that is a friendship that will last any length of time because she knows me to my very core. But our relationship has changed beyond all recognition, from cosmos and dancing to tea and TV, our relationship has had a complete overhaul. I know though that with allot of work, we will adapt our friendship to fit any lifestyle that comes along.
However I will tell you that I now relate to my “unhealthy friends” allot easier than my “healthy friends” but which ones will be around in ten years? Now that’s a question I look forward to finding the answer to!
Rachel Stott x