From a young age we all have our dreams and aspirations as to what we want to be or do when we grow up. Our childhood dreams often don’t quite equate to the reality of life. When we grow up you think that being Superman is just as much a possibility as being a Dr. But whatever the role we strive to achieve we all carve a path out for ourselves expecting to be able to follow it more or less.
No one plans to be ill. I know I certainly did not think I would be so ill that my career would be jeopardised not once but twice. After my first change in career from sport I never thought that once I was a nurse I would face having to give that up too but I did and that is now 2 careers that have been halted due to illness.
So what now?
How do I pick myself up, dust myself down and get on with finding a new career and new purpose for my life once again?
I have been very fortunate in that I have been able to change the negative situation of living with a chronic condition that dictates much of my life and make this positive. Finding patient advocacy, patient involvement in research, and raising awareness have done just that for me.
Originally I did not set out to become a patient advocate, I just wanted to raise awareness about living with severe asthma. This has had a snowball effect which has opened up so many doors for me. I now actively look for new ways I can get involved in research but my advocacy work is all independent and driven by myself.
By being active on social media I have been able to make connections with various companies, research institutions and independent researchers. This has been the back bone of generating the work I do. Often people think being prevalent on social media just means you sit on your phone the whole time and don’t actually do much else. It is way more than that. I will sit and spend time researching what I am going to put out on social media and then plan what I will say, the hash tags I use and various other things. It is not a case of just putting random stuff up.
As a school leaver I did not set out to become a patient advocate. I don’t think anyone would as no one wants to be chronically ill to the point you cant work but I am happy with the role I have forged for myself and the direction my life is taking. While I don’t want to be in this role for the rest of my life I am happy with it just now while I try and get my health a bit better and my body in a position to be able to perhaps get back to Nursing again.
ANONYMOUS-ASTHMA 