Explaining severe asthma to other people

Use these simple ideas to help others understand what severe asthma’s really like

In an Asthma UK survey, 96% of people said they don’t think the general public understands what severe asthma is like. This can make it harder to get the support you need.

Severe asthma: when people don’t understand, it makes life harder

“I hear the phrase, ‘it’s just asthma’ all the time.” 

“Most people I know think asthma is just a wheezy chest and bad cough now and again.” 

“People think asthma just needs an inhaler. Friends look at you on good days and don’t understand why you spend so much time in hospital.” 

“Most people think it’s nothing. They think you just do a few puffs of an inhaler before you do something like run and that’s it.” 

“People assume that because thousands of people live with the condition, take their blue inhaler and are ok, that I am just milking it. I am asked ‘is it just asthma?’ when I can’t walk to the end of the street.” 

“Most people just think asthma is for lazy people and that it’s not serious. Then you tell them that people die each day and they are shocked.” 

“People very often give me ‘that look’ when I say that I can’t work because of my asthma. But I am in hospital multiple times each year with at least a fortnight of recovery time needed each time. Who would employ me? Asthma is a small word and a very big condition.” 

“Parking in disabled places people pass comments because you don’t look elderly or sick without knowing that a very short walk in the wrong weather can lead to a hospital admission or at the very least an asthma attack.” 

“People continue to say, ‘It’s just asthma.’ There are very few people in my life who truly understand. Some of my relatives tell me I am putting it on.” 

Talking about your severe asthma can help 

Talking openly to your family, friends and colleagues about your severe asthma can help them understand the condition. Someone who listens to you is more likely to:  

  • Take your asthma seriously 
  • Understand if you have to take time off work or cancel social plans
  • Feel less frightened and help you if you’re having an asthma attack. 

And you’re likely to feel supported rather than misunderstood. 

“I think the worst thing I’ve done in the past is tell people: 'It’s just asthma.’ No it’s not. It’s severe asthma and it’s life-threatening. I think honesty is the best policy.” – Jo Beecroft

3 ways to make talking easier

  1. Plan when and how you’re going to have the conversation. For example, you could book a time and room at work to chat with a colleague, or ask a friend over for a cup of tea. Turn off the TV or radio, put mobile phones out of sight and make sure the rest of the family, colleagues and pets are unlikely to need your attention for a while.
  2. Show them a copy of your written asthma action plan as it contains all the really important information about your asthma. It can help you explain your asthma triggers and medicines, and what you have to do if you have asthma symptoms or an asthma attack.
  3. Give them our website details. Either before or after you’ve talked to someone, ask them to read up about the asthma basics with our What is asthma? and What is severe asthma? pages, and look at this page about supporting friends or colleagues with asthma

6 phrases to help explain severe asthma 

How you explain severe asthma will depend on who you’re talking to. Try these helpful summaries to get you started – you can change them depending on your relationship to the person, how long you’ve known them and how comfortable you feel saying certain things… 

To explain what asthma is…

“Having asthma means sometimes the tubes that take air into my lungs don’t work very well. Think of a straw. You can usually suck through lots of air. But if you pinch the straw so the hole is narrower, then you can’t through suck as much air. That’s what it’s like for people with asthma.”

To explain what severe asthma is…

“Most people with asthma can take medicines that prevent the symptoms. For the 4% of people in the UK with asthma who have severe asthma, like me, the usual medicines don’t work so the symptoms are much harder to control.” 

To explain that severe asthma is different for everyone…

“Everyone with severe asthma is completely different and has their own individual mix of symptoms, triggers, medicines and experiences and these might vary from day to day, over the course of a year, or at different times of life.” 

To explain what living with severe asthma is like…

“Severe asthma can be very unpredictable. I have good days and bad days. On a good day I can go to work and exercise; on a bad day I can’t climb the stairs. I have lots of appointments with my asthma specialist because we’re still trying different combination of medicines and doses to get my symptoms under control. I’ve been to A&E and had to stay in hospital. It’s difficult to plan ahead for anything because I never know when my symptoms will get bad again. There is no cure for asthma. I will have it forever.” 

To explain what an asthma attack is…

“When I have an asthma attack, I can’t get enough air into my lungs. I start wheezing, coughing, I can’t talk properly and my chest hurts. I can use my blue reliever inhaler/use my nebuliser/take some steroid tablets, but if these don’t work it’s a medical emergency and I, or someone I’m with, need to call 999 for an ambulance urgently.” 

To explain what things make your asthma worse…

“Everyone with asthma has certain things that make their asthma worse and these things are different for everyone. For me, being around cats/grass/dust/cigarette smoke/cold weather makes it harder for me to breathe properly.” 

Need ideas on how you can explain anything else?

Call one of our friendly asthma nurse specialists on our Helpline on 0300 222 5800 or via WhatsApp on 07378 606 728 (Monday-Friday; 9am-5pm). 

 

Last updated February 2019 

Next review due February 2022