Recently in a lot of groups, on Twitter, Facebook and Instagram there have been various projects or statement about not being your illness/ condition and not letting it define you. So many people have been jumping on this and saying how they are not their condition, or that their condition is part of them but not who they are.
I’m not sure I agree with this. Asthma has dominated my life and dominated it even more so for the last 11 years. If I was to say I am not my condition or my condition does not define me would be a blatant lie.
I am my asthma and asthma is me. I will never be able to get away from it or have some memory of asthma around me everyday. As terrifying as having asthma is, as life limiting it is I am embracing have it. There are some really rough days where I wish I didnt have asthma. Those days where it is a fight to get every breath and just drinking is a mammoth effort I do wish I didnt have asthma. Then there are the days when having asthma doesn’t inhibit my ability to do anything as long as I take my inhalers, tablets and nebulisers. Those days are great. With the good days come the bad too.
Wishing for a cure is something I do everyday. To have a cure would mean my body is not crippled by side effects from taking prednisilone, my heart rate would drop below 100, I wouldn’t have a constant tremor from relying on short acting beta agonists, going outside I wouldn’t have to worry about what may happen which could provoke an attack, i wouldn’t need to plan my day around medication, I wouldn’t be on first name terms with my pharmacist, I wouldn’t know all the nurses in various respiratory wards around the UK. These are all things I wouldn’t have to do if a cure was found for asthma.
BUT
A cure is not going to come in the near future as nice as it wold be so until then I embrace having asthma. It is me, it is a massive part of my life. I hate it but at the same time having asthma has given me so much to live for. Just by having severe asthma I have done so many things I never would have thought about doing. My life is now defined by having severe asthma. My work was chosen based on my asthma, my volunteering is based on having asthma, my work with the research centre I would not do if I dint have asthma, my involvement in my lacrosse club would not be what it is if I didnt have asthma. I have no idea what my life would be like, Im sure it would be very different but would it be different in a good or bad way? Its a question I can never answer and I don’t want to know the answer.
The only thing I do want just now is to not have so many life threatening attacks which land me in the resus room and weeks in hospital. Those are fights I could do without. I would also love for my consultant to be able to over me different treatments to try and not need to take my case to a group of experts to try and find some kind of treatment to give me some life back.
In all I am my condition. To say Im not would be a lie. But I am proud to be defined by my asthma. Not having asthma I wouldn’t have done all I have. It would be nice for it to be a bit better controlled but in the future it will be.
What I want to say is all those who don’t want to be defined by their condition think about what you have done because you have it which you wouldn’t have done otherwise? Our conditions are part of us. They make us who we are. The stigma around having them is hard but when you embrace it mentally you can deal with it so much better!