Severe asthma is a complex disease that impacts every aspect of a persons life.
I have lived with asthma almost all of my life and severe asthma for over half of it too, even before it was classed as severe it was always hard to control. There is not one aspect of my life that has not been touched by severe asthma.
It leaves you feeling lonely, isolated and very scared with no one to turn too. Thanks to modern technology we can be less isolated through social media and online support group message boards. These offer some relief and guidance for people who are just searching for answers.
Severe asthma is such a complex condition which is poorly understood. We are only now discovering the potential different phenotypes of severe asthma and how best to treat them however this is only for a small portion of severe asthmatics so far. Hopefully more discoveries will be made and more people will get treatments that help their specific type.
There are numerous specialist severe asthma centres across the UK and the world. They give the patient access to see a range of people from a multi disciplinary team such as a consultant, nurse specialist, physiologist, psychologist, dietician, physio and potentially more but there is always something missing. A part that no amount of training, courses, or degrees will help you with the answers.
Over the years I have always found myself asking questions that can never be answered when I am in clinic seeing a member of my healthcare team. My questions all relate to the lived experience of having severe asthma. For example:
- How do I speak to my work about my severe asthma
- What is the best way to get travel insurance for going on holiday
- Relationships and managing them while trying to live with severe asthma
- Pacing while you have severe asthma so you can get through your day without running out of steam
- Medication side effects and how to get over them
- Getting over having a severe asthma attack that lands you in hospital or worse the critical care unit
These questions can never be answered in a clinic appointment. A clinician may bumble along and try to give some sort of answer but honestly only lived experience can really help. Lived experience means someone who has the same condition as you do (it may differ as no two people are the same) and can help you by sharing how they address such issues.
Social media and message boards have been a fantastic tool to bridge the gap but it does not go all the way in helping people with severe asthma. Message boards and social media can often have a bad attitude depending on who is responding or who is posting. There can also be a competitive culture which does not help anyone because after all we are all there for the same reason and that is because we are living with severe asthma and have questions that need answers.
I have been thinking for a while about setting up a severe asthma peer support group which I have the support from Asthma + Lung UK. Next month is the first meeting. I am so excited because peer support can offer people so much and goes along way to combat some of the issues many of us face and are unable to get through themselves.
As well as being a peer support group for people with severe asthma there will be guest speakers coming a long every so often to give us talks about different aspects of living with severe asthma. One potential talk will be about exercising with severe asthma which I know many people struggle with but have an interest in.
I hope in setting up this peer support group we will be able to help people with severe asthma so they don’t feel so alone and scared. We can link people to each other have general discussion about life and hopefully enhance our own lives by taking away tips and tricks others might give us.
If you are interested in joining the Severe Asthma Peer Support Group please leave me a comment here, message me on social media or if you have my email send me one.