How often do we read or hear that asthma is “just asthma” and an inhaler will fix it all. Everyone knows someone who has asthma but not everyone knows how bad asthma can be and that it kills people. 3 people die each day in the UK compared to the 10 across the United States. I am not saying that 10 is acceptable but compared to the UK it is far better. In fact the UK has the worst asthma death rate for a developed country.
The big question is why do we have such bad statistics?
We have the National Health Service, Asthma UK, 2 dedicated research centres- the Asthma UK Centre for Applied Research and the Asthma UK Centre in Allergic Mechanisms in Asthma which is providing asthmatics with cutting edge technologies and trying to get a better understanding of asthma, the different types of asthma and best ways to manage it. Despite having all this, asthma as a condition is horrendously underfunded when you compare the funding given to cancer or heart disease. Asthma is way more prevalent yet still not fully understood. To begin to understand asthma, and the different phenotypes (types) there needs to be a huge input of money much like there is for other conditions.
Why is money not being given to improve outcomes of those with asthma?
I believe that we as asthmatics have a role to play in this specifically the role that we play on social media. Over the last decade social media has exploded. Everyone (although there are some exceptions) uses social media of some sorts wether it is Facebook, Twitter, Instagram or LinkedIn. It is used for both social and professional use and although there are some restrictions in place you can post pretty much anything and it can be available to most who are looking for it.
I use social media in a number of different ways. Through Facebook, Instagram and my blog I can share my advocacy work and awareness about the condition, how I deal with it both the negatives and the positives, and also new medications that are coming out as well. Twitter is an excellent vehicle for knowledge exchange specifically for research as you can share snap shots of what is happening and not need to search a website and read through screeds of stuff.
On Facebook one of my roles is that I moderate and administrate several support groups for those with asthma, severe asthma, difficult to control asthma etc. I feel very honoured that I have been asked to become a member of the admin team for these groups however it is tricky. Many of these groups can be accessible to anyone who wants and people can post what they want, equally they can post what they want on their own pages too. I believe this is where asthma or more specifically asthmatics get a bad reputation and unfortunately when someone reads something in one place then an entire groups can be tarnished with the same brush.
What am I actually talking about? I often get into trouble or arguments with people because they are not acting responsibly and not taking their condition seriously. This would be fine if they were keeping this to themselves but many are not, instead it is being shared on social media. For example:
“my breathing is really bad and having to use way more nebulisers than I should so need to go to hospital but I have stuff to do first”
This type of thing I come across on just about a daily basis and it makes my blood boil. We have a role wether we like it or not to take our asthma seriously and get help when we need it. Part of me feels that anyone on the outside seeing this would think why should be invest lots of money in asthma when those with asthma are not being sensible with it.
I firmly believe if you need to get help you need to get help, a shower, shopping, housework etc can wait. If you don’t wait you might not be there to do it in the future. No one likes going to hospital and many with severe asthma spend a lot of time going to hospital resulting in admissions and plans changing. It is not ideal but it is what it is.
I have had 2 friends die from asthma and know of many others through my work with Asthma UK and being involved in support groups that have also died. For some of them the reason they died most likely could have been avoided had they got help when they first started feeling unwell. I am sure if I was able to ask them they would say they wished they got help sooner as they might still be here now.
I use the examples of these 2 friends in response to comments people leave like above. This will often cause many to get angry with me but if you are unwell you need help there and then. People do not see this and expect sympathy and attention but if you do not act responsibly then you are not going to get sympathy. If you really want to live then you need to go and get help. There have been times when I have just wanted to pretend asthma is fine and I don’t need help because I have something on and don’t want to miss it but then I think of Dawn and it jolts me back to earth forcing me to get help.
Wether we like it or not we are ambassadors for the condition. The outward projection we give I think has a large part of why asthma is not taken seriously. I am blunt and will say to people that if they want their asthma to kill them then they are going about it the right way. It is very blunt but it is the reality.
I know for sure there will be people who read this and have posted irresponsibly who will be angry. I do care that they will be angry but at the same time I don’t because what we post on social media can influence others with asthma who may be new to the condition and they don’t know any better and think what they read is ok to do. Remember asthma can kill anyone not just those with severe asthma so those new to the condition may see stuff and think because someone who has had asthma longer than they have must know best and it is ok but it is not. We must lead by example and if we are not going to then we must keep this private and to ourselves.
So how much is social media playing a role in the reputation that asthma has. I will continue to try and get people to understand why asthma must be taken seriously and that when you need help for your breathing you need help and should not go and have a shower etc first because you think this is the priority.
I am an ambassador for asthma as we all are. Asthma needs to be respected much like other chronic health conditions are and it is not acceptable to post irresponsibly on social media for others to see and be influenced by. We desperately need more funding to understand asthma better and if we can do our part to help achieve this we might get there quicker than we are now.
Rant over but bottom line is: social media can be toxic in how people view asthma because of what those with asthma post for the public to see.