We hear through our Helpline, social media and surveys that having severe asthma can have a big impact on your life and sometimes leave you with difficult feelings. That doesn’t mean you’re not coping but it might mean you could benefit from expert help and support.
From listening to people with severe asthma we’ve come up with a list of the most common feelings you might have on a bad day, and found some simple tips and ideas for tackling them.
People with severe asthma tell us you sometimes feel:
- Like a burden because you need more support from family and friends when you can’t do everyday things, such as going food shopping, or because you miss work due to your asthma and feel bad about letting down colleagues.
- Misunderstood, because people around you don’t take severe asthma seriously or understand how difficult it can be.
- Lonely, as though you’re the only person in the world who has severe asthma, especially if you’re having to spend a lot of time at home or in hospital because you’re so unwell.
- Frustrated, as it can affect your social life, mobility, work and family life, and because it can take a long time to find the right combination of medicines to keep asthma symptoms under control.
- Guilty that it’s somehow your fault because you’ve smoked in the past or not taken your medicines properly.
- Hopeless – in an Asthma UK survey, two-thirds of people with severe asthma said they felt depressed.
There’s plenty of support available
Whatever you’re feeling, if you’re having a bad day or need a bit of inspiration, please remember that you’re far from alone.
It’s natural to be uncomfortable about having to rely on others to help you get around or run your household, but more often than not loved ones and colleagues are only too happy to be supportive once they know how they can help.
Remember that severe asthma can change over time
If you’ve had lots of asthma attacks or a stay in hospital recently, you’ll probably need more support with all sorts of things, such as collecting prescriptions or making meals. But just because you need that support now, it doesn’t mean you always will. Your asthma specialist will keep working with you to work out what your asthma triggers are and help you find the best combination of medicines. There are also lots of simple things you can do to manage your symptoms as well as possible.
Let friends and family support you
There is evidence to show that people with a good support network can manage a long-term health condition better. Having support – both practical and emotional – is an important part of managing severe asthma. And it’s likely that the people who care about you will be only too pleased to help you – even if it’s just in a small way.
Write a list of everyone who could help you. Your partner could remind you to use your preventer inhaler every day, for example. Or a friend could go to an asthma appointment with you and help you remember all the questions you want to ask. You might find it helpful to show them our page on caring for someone with severe asthma.
“My family are very supportive, and my parents have been my rock through all the difficult times.” – Kate Harris, 47
“The instructor and everyone in my Taekwondo class is aware of my asthma, and I’ve shared my written asthma action plan with my husband, children, and a few friends who I train with, so they know what to do if I have an asthma attack. Knowledge is power and I feel reassured that there are always people nearby who can help if I start to get symptoms.” – Jo Simm, 44
Talk to your boss and colleagues
If you have to take time off work because of your severe asthma, be clear with your boss and colleagues why you can’t come in. The more you explain about your symptoms, appointments, hospital stays, medicines and asthma attacks, the more they’ll be able to understand how severe asthma affects your life. And we have lots more tips on working when you have severe asthma.
“Sometimes employers can have issues with my condition and that frustrates me as they don’t understand it and often aren’t very supportive. It’s hard when people think you’re exaggerating how bad your condition is.” – Celena Dell, 34
“My employers have been pretty accommodating when I need to go to medical appointments, and they’ve asked me to write something for the staff website so I can help people understand my asthma better.” – Peter Naylor, 52
In a recent Asthma UK survey, 96% of people with severe asthma said that the general public doesn’t understand what it’s like to have a diagnosis of severe asthma. As severe asthma affects only about 1 in 20 people with asthma, most people don’t know anyone with it so perhaps it’s not surprising that it’s so misunderstood. Even GPs may rarely see someone with severe asthma.
“The one thing that would make my life better right now would be improving other people’s understanding and awareness of asthma, and severe asthma in particular. People don’t understand that asthma is a condition for life and just how bad it can be.” – Peter Naylor, 52
Get to know the condition
Knowing the facts about severe asthma will make you feel more confident about explaining your condition to others. We have lots of information about what severe asthma is and how it’s different from ‘difficult to control’ asthma.
Help others understand severe asthma
Talking to your family, friends and colleagues about your severe asthma can help them understand the condition and take it seriously. You can find lots of ideas and tips about explaining it to other people here.
Around 200,000 adults and children in the UK have a diagnosis of severe asthma, but at times you may feel as though you’re the only person in the world. Comments on our Facebook page and forum show that it’s not unusual to feel alone or fed up, but that the key to dealing with feelings of isolation is by finding the right support.
Everyone is different, and we all need different kinds of support. Have a think about what kind of support would be most useful to you.
Join a group
“I get a lot of support from people online who have health conditions much the same as mine. I feel less isolated when I’m in touch with people going through similar experiences, especially if I’m stuck indoors or in hospital because my asthma is so bad. I’ve found the Asthma UK Facebook page really useful for connecting with other people who have asthma.” – Julia Kerr, 29
Make time for friends
In a recent Asthma UK survey, 70% of people said severe asthma has had a negative impact on their social life.
“My social life suffered. I couldn’t go out with my friends and some of my friends didn’t know how to handle it all. They didn’t understand what severe asthma was.” – Celena Dell, 34
Even if you’re going through a bad time with your asthma so you can’t go out or enjoy doing the things you usually would, don’t get in the habit of spending too much time alone. Instead, keep in touch with the people who care about you to share your good and bad days, even if it’s a quick call or text message.
Call a friendly asthma nurse
You can call our Helpline on 0300 222 5800 (Monday-Friday, 9am-5pm) and speak to one of our friendly, expert asthma nurses.
“I’ve met lots of people who’ve used the Asthma UK Helpline, and I’ve heard nothing but praise, so I know the nurses are there if I need to talk about my asthma concerns and worries.” – Nichola Duane, 39
If you’re going through a bad time with your asthma and/or it’s taking a long time to confirm the diagnosis or find the right combination of medicines for you, having lots of symptoms may leave you feeling frustrated because you can’t go to work or do some of the everyday things you used to do.
Work out what you can do on good and bad days
Most people with severe asthma have good and bad days. The key to dealing with feelings of frustration is to accept the bad days when you’ll probably need plenty of rest and to enjoy the good days when you can do more things you enjoy – even if you need to adapt your plans according to how you’re feeling.
“I used to be quite proud and force myself to go to the gym even if I wasn’t feeling well, but now I recognise the warning signs. I’ve been using more weights recently as that doesn’t make me feel out of breath like cardio does.” – Peter Naylor, 52
“What I’ve learned is that you don’t have to completely give up your favourite hobbies when you’re diagnosed with severe asthma. For example, you can still participate in sports, but you might have to adapt them or tailor them to suit you. Planning is key and you need to make sure you’re feeling well with your asthma. I always take my reliever inhaler with me and keep spares handy.” – Nichola Duane, 39
Don’t give up until you get the help you need
Getting a diagnosis of severe asthma and then finding the right medicines to treat it can take a long time – months, or even years. In fact, in an Asthma UK survey, over 55% of people with severe asthma said it had taken a few years to get their asthma medicines right. And while it’s true that severe asthma can be a very complicated condition to treat, your asthma specialist will keep on working with you to control the symptoms as much as possible. So don’t give up!
“I still haven’t got the right medications, even though I’ve had inhalers that could fill the rainbow in colours! I don’t think we’ve got the combination right yet but my consultant said it’s trial and error – we have to start with the basics and move forward, which we’ve been doing for a year now. If you’ve just been diagnosed, try to be patient and to find a distraction, don’t let it control your mind. Be calm, be open and remember that your GP is there to support you.” – Vickie Taylor, 27
Some people tell us they feel guilty about having severe asthma and worry that they did something to cause it. It’s true that factors such as smoking and being exposed to secondhand smoke make asthma worse over the long term, but there are many reasons people get it. For example, having a family history of asthma or a related condition such as eczema or hay fever can raise your risk.
Remember, it’s not your fault!
Instead of feeling guilty, what’s important now is to put your energy into avoiding the things that trigger your asthma and finding the treatments that will work best to help you manage your severe asthma so that it doesn’t stop you doing the things you want to do in life.
“Before my severe asthma diagnosis, I felt like the doctors thought I was a hypochondriac. I felt angry and like no one was listening to me. It made me question whether it was my fault and I remember so many times being too worried to book an appointment.” – Vickie Taylor, 27
“Having my first asthma attack was the scariest thing I’d ever been through in my life – it was a big turning point for me because I just didn’t realise how serious asthma could be. When I was diagnosed I didn’t take my asthma medicines properly because I didn’t think they were helping. In hospital after my attack I made a promise to manage my asthma differently and look after myself better.” – Joanne Beecroft, 36
While your asthma can’t be cured, there are still lots of things you can do to help manage your symptoms. The top three things you can do are:
- Go for regular reviews of your medicines to check how well they’re working to reduce your symptoms
- Work out which pollutants and irritants (such as dust, fumes and pollen) affect you so you can avoid them wherever possible
- Quit if you smoke.
People with severe asthma tell us they’re more likely to feel depressed and anxious. It’s only natural to feel down if your asthma’s been getting worse and you’re worried about having an asthma attack or ending up in hospital.
In fact some studies suggest that depression is up to six times more common among people with asthma than in people without it, and this figure is higher in people who are having lots of asthma symptoms.
Speak to your GP
Low mood can make it even more challenging to manage your severe asthma and can mean you’re less likely to stay well with it, so talk to your GP or asthma nurse about some of the different ways to deal with depression and anxiety. They can also refer you for counselling if necessary.
Learn to spot negative thoughts
If you’ve recently been diagnosed with severe asthma, find out more about coming to terms with a severe asthma diagnosis.
“I have to accept that I have asthma and there’s no cure – that’s a fact. But what I can change is the way I feel and think about it, and what I do to manage it, such as taking my medicines and keeping active. I practise meditation, and I’ve had some cognitive behavioural therapy through the NHS Time to Talk programme, which I’ve found very useful for asthma – it’s all about challenging negative thoughts.” – Peter Naylor, 52
“I try to remember that this might be tough but other people have it worse. I stop self-pitying and start doing productive things like reading a book – you don’t need great lungs to read! I also do jigsaw puzzles and play with a Rubik’s Cube. Mindfulness and Dialectical Behaviour Therapy (which focuses on changing unhelpful thoughts and accepting yourself) have also helped.” – Vickie Taylor, 27
Just because it’s bad, doesn’t mean it’ll get worse
There is currently lots of exciting research into treatments for severe asthma, several of which Asthma UK is helping to fund. So even if your asthma isn’t currently well managed, this doesn’t mean it never will be. There may be a treatment that works better for you on the horizon, either on its own or alongside existing treatments.
In the past few years, for example, four new medicines for people with severe asthma have been recommended by the National Institute for Health and Care Excellence (NICE).
“Because severe asthma is so unpredictable in the treatments it responds to and the course it takes, the long-term outlook is different for everyone,” says Dr Andy Whittamore, Asthma UK’s in-house GP. “Some people find their symptoms improve, some go through good and bad patches and some find their asthma symptoms get worse over time. The good news is that your team of healthcare professionals will keep working with you to manage your symptoms as well as possible.”
“Maybe one day my medicine may be decreased and the severity of my condition reduced, but until then I will continue as I am, with a smile on my face, remembering I am lucky to have survived the attacks I’ve had.” – Celena Dell, 34
Last updated March 2019
Next review due March 2022