What is severe asthma really??

And what does severe asthma look like?

In all the photos above I have severe asthma (some of them are a lot older than others). In the top photos it doesn’t look like there is anything wrong with me but the bottom photos you can clearly see there is something not right. But in all the photos I have severe asthma even though you cant see the state my lungs are in. This is what can make it tricky for people to understand how devastating it can be. Unless you are in hospital you cant really outwardly see the struggles and effort that goes into every breath all day, every day. You will often read things online that say hold your nose, breathe through a straw and run up some stairs and that is what it feels like to have an asthma attack, on some days this is what it feels like all the time but you don’t have the luxury of taking the straw out your mouth and stop holding your nose. You have to keep going, even when you are so tired and what to stop you know you cant stop you have to keep going, there is no choice about it.

Severe asthma is so complex made more so because of its name. Severe asthma is nothing like living with asthma yet having the prefix severe makes it seem like it would be much like if someone has a severe headache, it is a bad headache but the characteristics mimic that of a headache that is less severe.

Severe asthma is essentially a condition of its own and many who live with severe asthma want it to be renamed as there is so much confusion about it. Confusion which is not just experienced by people with severe asthma but also the medical profession and others with asthma too. Over the years it has become more apparent how often the term severe asthma is used incorrectly, the most often is in primary care when a GP or asthma nurse will say to their patient their asthma is severe but what they actually mean is that the patients asthma is not controlled because their medication is not optimised rather than the patient having severe asthma. What this does is can cause issues further down the line. The patient thinks they have something they don’t, or there are those who may have a bad attack and need medical attention in an A&E, they then say they have severe asthma so Drs who have not treated anyone with it before think that is what it is like. I am not alone in experiencing fear when a Dr in A&E says they have treated loads of people with severe asthma and they are always fine. Anytime a Dr says this you should worry. Normally a few hours later I hear the same Dr say to me that they have not seen anyone whose asthma deteriorates so quickly. If I had the energy I would want to tell them that now they know what severe asthma is like.

Severe asthma is nothing like any other type of asthma. It is a unique condition that affects those with it in every aspect of their life, there is not a part of life that is not affected. It is often a condition that no one understands until they have lived it. Not even family or friends can really understand. They can watch on from the sidelines but after so long they grow tired and forget about you or if it is family they get frustrated.

I wish there is greater understanding of what severe asthma is and also everything else that happens as a result. Severe asthma is almost an umbrella term because the treatment needed to manage the condition causes so many other conditions. Most people with severe asthma will find they are on so many medications but a large proportion of the medication is actually not for their severe asthma but conditions as a result of medication. I take over 30 medications however 2/3 of them are not medication for asthma but for conditions as a result of long term prednisilone and multiple admissions to intensive care.

One of the hard bits living day to day with severe asthma is that you cant even live day to day it is often hour to hour. I often give talks at various different events and one of the briefs is often what is it like to live with severe asthma and how does it impact you day to day. I wish the audience could follow me for a few days just to see what it is really like as there is only so much you can understand from words, you need to actually see it.

Everynight I go to sleep and wonder how many hours sleep I will manage to get, how many puffs of my inhaler or nebulisers I will need, once asleep I often wonder how I will wake up the next day. Will I manage to get on with the day I have plan or will those plans need to be scrapped. It is like going on a rollercoaster that you have never been on before or the tower of terror leaving you in suspense of not know when you will next drop- it catches you unaware but most likely when you have plans you are really looking forward to.

When an attack hits, it hits hard and there is often very little you can do to stop it escalating, even medics (when they know what severe asthma is) cant always it is a case of throwing everything at you and hoping for the best knowing that they have the machines to save you should you no longer have the energy or strength to keep breathing yourself. The odd thing however is that most asthma deaths happen in those with mild asthma who may or may not be taking their treatment yet when you have severe asthma you are not as likely to die from an attack but have a high probability of going to hospital or in many cases critical care, you are more likely to be plagued by the conditions that you have accumulated as a result of the medication and these will often cause premature death.

It is a terrifying experience knowing that you are at the mercy of others. Triggers are what cause people with asthma to experience symptoms and difficulty breathing. More often the things that cause attacks are not self inflicted, but caused by other people such as through smoking resulting in second hand smoke. Imagine doing everything you can to avoid something and keep yourself because you have plans yet you are then triggered by something that it completely out of your control. Imagine knowing on a daily basis that everyone around you could potentially put you in critical care (of course there will be those who say that anyone can be a risk to someone but it is highly unlikely). The other part that fills me with fear is knowing what awaits me when I have an attack, knowing what the experience in critical care will be and the recovery that will follow it. Most people go to critical care once in a lifetime if that not a few times a year sometimes more.

We are in a desperate position just now where people with severe asthma are living with a condition that is misunderstood and those in the medical field who do truly understand it are few and far between so the population with severe asthma are underserved. To progress forward we need to understand it more, there needs to be more funding into research to establish how severe asthma works and the best ways to treat it. With more pressure on the NHS particularly with an aging population and a rise in respiratory conditions the respiratory wards are fuller, and beds are at a premium so often people with severe asthma are scared to go into hospital for fear of not getting the help they need. I hear this so often from others with severe asthma, for years we are told to make sure we get help early and that if our oxygen saturations have dropped we needed to be in hospital a long time ago but now many are finding when they present early they are not taken seriously because of the lack of beds and staff so they are dismissed only to get bad later and end up in a really bad situation so people with severe asthma don’t want to be left in this situation so are often trying to see what they can do themselves at home before needing to get help so they will be taken seriously.

I could go on and on about what severe asthma is but what I want to get across is that it is unique, unpredictable and misunderstood by so many people which leaves people with severe asthma living with frustration and fear. This is why I share so much of my experience on so dial media and speak at events because it is an invisible condition. I am desperate to be able to live my life again but am stuck dealing with consequences of a life that has been dependent on oral corticosteroids.