Today marks 7 years since I was down in London at the launch event of Healthcare Heroes- a collection of people who have made a positive impact through their work. I was invited and my story told because of the work I had been doing as a patient advocate for the severe asthma community. This to date is still one of my proudest moments, it also marked a time when I knew sharing my story was having an impacted, it was helping people no matter how hard it was for me to relive some of the scariest moments I have had.
I have not written a blog post since last year as I have been doing a lot of soul searching, and trying to decide what I want to be doing with my life and how my advocacy fits into that picture. So much has changed for me in the last 2 years, especially since March last year more so than the year before and I had to take some time and not make any firm decisions until I was sure exactly what I was wanting to do.
I have decided that now is the time to step away from doing a lot of the patient advocacy work I have been doing over the past years (far too many to count). Part of me will always be a patient advocate but it will not be at the fore. I have also decided now that I am not going to be doing as much patient and public involvement work either. The time is right for this move as I have come to the end of my time as Patient Chair of SHARP (Severe Heterogenous Asthma Research collaboration Patient centred) which takes up so much of my time. The research projects that I am involved in I will remain and see these out and will probably take on some new projects but they would be on a very ad hoc basis and if I have the time. I am involved in a couple of projects that are very close to my heart and I will stay with them and hopefully beyond too as they fit with the direction I want my life to take.
(If you are a researcher and are reading this firstly if I am working with you and have not said anything about leaving doing PPI stuff then I am very much staying, but also if you are a researcher who has worked with me and wants to in the future please let m know as I will be doing some stuff).
The decision to step away from patient advocacy was easier as I have found it to be a bit of a toxic environment just now. Before when I first started out although it was not a conscious decision to be a patient advocate it just sort of happened there was no trolling or complexities whereas now as soon as you post something you are at risk of people questioning what you are doing, then nit picking every single thing and accusing you of various things. Over the years it has become more and more toxic. I was going to stop when I was still nursing after the issues I had with Nicole Gray and her going to my work but I didnt want one person to stop me when so many were benefitting but I am now tired of it and then again during COVID when I was reprimanded by the Asthma UK Applied Research Centre for something I said on social media but again I didnt. I am now too tired of the constant negative messages and people questioning every little thing I do and post. I will still post some stuff but the angle will be different it won’t focus on living with severe asthma on its own but it will focus on being an adaptive elite athlete with severe asthma not just a person with severe asthma.
I will still keep running the severe asthma peer support group which I have been running for over a year now as it is a good group of people and offers so much support for so many. I am glad I stuck to my guns and kept it as a group for just people with severe asthma and not open it up to other types of asthma. I hope the group will continue to grow and offer support to people with severe asthma all over the world.
Over the years severe asthma has destroyed so many of my hopes and dreams. No part of my life has been immune from its effects. It brought about the downfall of my first career choice, then my second, my sporting aspirations (which until last March I thought would never be part of life again) and even relationships. When every aspect of life was touched by it you start to wonder if there will ever be a time where you can dream or have hopes for what the future might hold. I don’t know what it is that has changed and meant that my asthma has been a bit more stable or that because I had an enforced period of rest with my stomach it actually gave my lungs a chance to really rest and recover.
For just now I am riding the wave and just enjoying all the experiences I am able to that I am able to. So far this year I have started 2 new sports on top of wheelchair rugby league and involved in them at much higher levels than I ever thought possible so while my body is letting me I am just doing all I can. I am not naive and I know that my lungs may go south again to the point they were at before but at least if that happens I know I have grasped all opportunities I was able to with both hands and enjoyed myself, leaving no regrets. I am also setting things up to get myself back to work too so lots of positive things which is why I needed to let some things go as I cant do everything.
ANONYMOUS-ASTHMA 