but the publishing of my story in The Lancet Respiratory Medicine left a really bad taste in my mouth. The article was published back on the 7th July but I didnt know this. I didnt know until yesterday that it was live. I didnt find out it was live because The Lancet got in touch with me, that would have meant this post would not be happening. It was a chance conversation with a colleague who had seen the piece and they actually sent me the link to it.
This is My Story living with Severe Asthma it is very personal. It is quite shocking when I see it all on paper and its not even got some of the worst parts of it. Its hard to read for me. Its hard to believe that this is what has happened. I read it and I keep thinking how am I still going. How am I still here and still have fight to keep fighting this horrendous disease.
I know why I am still here and it is because I am stubborn. It is the competitive side to me. I do all I can to not be beaten. This has been to my detriment at times and caused me to do things that have not been good for me but I have learnt and now I use my competitive edge in a positive way to fight severe asthma and also to advocate for others and others who don’t have severe asthma but chronic illness too. I will also use this determination to make sure that us as patients are treated with respect and treated as humans with the same regard everyone else is treated.
This experience with The Lancet Respiratory Medicine has made me question how patients are treated. Did they not get in touch with me because I am just that a patient. If this is the case then it is wrong and I will make sure they learn from this. The patient story is how we learn, how we improve lives, how we make medicine better. By us giving up our story allows this to happen. If we didnt then healthcare would not move on.
For one of the first times in all my time as an advocate I feel like I have just been brushed aside. It doesn’t matter she is only a patient. A lot of what I do in advocacy work is finding oppertunities and if they are not suitable for me I will recommend another patient who might be able to take on the opportunity wether it is telling their story for a piece like this, or if it is to be part of a study team etc but with that comes responsibility as you want that other person to have a good experience. I would hate to think I recommend a patient for something and then they have a bad experience and as a result they may never want to share their story or be involved in health again.
While I am bitterly disappointed in the behaviour of the Lancet and it may have been an oversite but first and foremost I want them to learn and to know how they have made me feel and the doubt that I now have. I have lost respect for them and will really need to think hard if I am going to do any work with them again.