Is severe asthma different to asthma?

In my last blog post I mentioned how I met some other people with severe asthma at a BLF-AUK event where we had a conversation about asthma and severe asthma.

It may have the same mechanisms in that it is a condition where the airways become inflamed and irritated causing difficulty breathing but here ends the similarities. The way it displays itself is different. The way it is managed is different. The way it impacts your life is different. There are too many differences to name them all so this is why we came to the conclusion that it needs a different name.

When someone hears  severe asthma they think its that common everyday condition that every second person has. The part they have not heard is the “severe” that went in front of the asthma which makes it very different, but because asthma is so common people are very relaxed so don’t take it too seriously or act urgently when dealing with it. This leads us to become so frustrated. I can think of so many times where I could potentially have not needed to go to ICU if the Dr I saw at the front door when arriving in A&E took my severe asthma for what it is and not treat it just like asthma.

One of the challenges that people with the condition severe asthma face is that so many in the medical profession refer to those with asthma that is not in control as having severe asthma or brittle asthma when they actually don’t. There are so many terms floating around to describe asthma that is not controlled for example

  • brittle asthma
  • severe asthma
  • difficult severe asthma
  • difficult asthma
  • severe brittle asthma

That is just a few. The issue arises is that some of these terms are used incorrectly and we have GP’s or nurses in the GP surgery telling someone with asthma that is not in control that they have brittle asthma when they don’t. They just don’t have their asthma in control at that moment and need some medication tweaks.

The types of asthma such as brittle asthma can only be diagnosed by a specialist asthma consultant at a specialist hospital. Not even asthma consultant at local hospitals can diagnose it as there is a raft of specialist testing and multi disciplinary input to ensure that everything is ruled out before you are diagnosed with this very rare type of asthma like severe asthma or type 1 or type 2 brittle asthma.

This is why I and others have been thinking that perhaps these extremely rare forms of asthma need a different name that perhaps does not even have the term asthma in its name to save us as patients from not being treated correctly. Maybe just then we won’t suffer so much when in hospital.

Another big issue for some with severe asthma is that we can look ok one minute and the next we are fighting for our life or we look ok but actually we are working incredibly hard to breathe but don’t want people to know. You cant see severe asthma unless you are having an attack which makes it so hard for people to understand just how debilitating it can be. How every aspect of your life is dictated by your condition, that even taking every medication that is there for asthma it is still not enough to give you a quality of life. It is hard to think that despite taking 30 different medications each day I still don’t have control of my health or my breathing to where I would like it.

I wish my lung condition could be covered by the term asthma but severe asthma is far more complex to manage, treat, control, and understand. No 2 people with severe asthma are the same which makes the condition so much more complex to diagnose and manage. This often leads to very frustrated patients and frustrated healthcare practitioners because despite everyones best efforts life is not good, hospital admissions are just part of life, even ICU becomes part of life which should never be the case.

This is why I think severe asthma needs to be totally separated from asthma and doing this could be achieved by changing its name to stop people from being complacent when treating you in an emergency situation.

I hate living with severe asthma and hate that it is so poorly understood. Maybe one day there will be a huge break through and suddenly all of us whose life is dictated by their severe asthma is no longer like that. Until then I will continue to try and raise awareness of what it is like and just how serious a condition it is.

Are you your illness/ condition?

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!