We’ve created this plan with the help of healthcare professionals and people with severe asthma, to help you manage your symptoms as well as possible.
Having severe asthma is different for everyone, and it can vary over time, too. It’s normal to have a mix of good and bad days. But we know it can sometimes make you feel out of control. You may get very frustrated that even though you’re taking your medicine and looking after yourself as well as you can, you’re still struggling with symptoms. It can be particularly difficult to have to put up with side effects from your treatments along with asthma symptoms.
If you know other people with asthma who aren’t struggling in the way you are, or you read about other people’s experiences in online chat rooms, it can be hard when you compare the way asthma affects your life. It can all feel very unfair at times. But it’s important to remember there are things you can do that can make a difference. In fact, it’s vital you look after yourself, because it can help you stay as well as possible with your asthma.
“My severe asthma diagnosis changed everything, and I became so withdrawn. I didn’t like the person I had become and I missed the person I was before. I quickly realised that if I wanted things to change I had to take back control. I had to learn about my asthma, understand my triggers and how to manage symptoms. It’s only now I’m feeling better with my asthma that I appreciate how poorly I was. There will be times when my asthma doesn’t work in the way I want it to, but when it does I feel great.” - Jo Simm, 44
1. Take the simple steps that can help you look after your asthma
“Together with your healthcare team, there’s a lot you can do to manage your own asthma in the best way,” says our Head of Helpline Sonia Munde. “Even if you still have symptoms, managing your asthma well can mean you reduce them as much as possible and lower your risk of having a potentially life-threatening asthma attack.”
It’s important for everyone with asthma to:
- follow a written asthma action plan
- go for regular asthma reviews, which may be with your GP or at a specialist clinic
- have their inhaler technique checked at every visit – it’s very easy to get it wrong and not get the maximum amount of medicine into your lungs
- know their triggers
- take their medicine exactly as prescribed.
This is just the same as for people whose asthma is not classed as severe. You might sometimes feel there’s no point taking these steps as you’re still putting up with symptoms – but remember it’s likely your symptoms will be worse if you don’t do the things you need to do to manage your asthma.
And by sticking to your treatment and going for regular asthma reviews, you can get to know your symptoms, understand what does and doesn’t work for you, and feed back to your healthcare team - so that together you can work out an asthma treatment plan that may help you manage your symptoms better.
2. Team up with your healthcare professionals
To make sure you’re on the right level of treatment for you, see yourself as part of a team, along with your healthcare professional. This will help them put the best treatment plan in place for you.
Take your medicines as prescribed
This will give them the best possible chance of managing your symptoms. If you have concerns, worries or forget, see more useful ideas here.
Keep a diary of symptoms
This will help you and your healthcare professional to get a clear idea of how your treatment is helping, or not helping.
Film yourself having symptoms if you find it hard to describe them
This can save time in appointments, and help your healthcare professional understand exactly what symptoms you’re having.
Always tell your healthcare professional if you’ve had an asthma attack
Even if you’ve ended up in A&E, they may not be informed automatically and it’s important they know so they can adjust your treatment.
Talk openly to your healthcare professionals
"Don’t be embarrassed to tell them if you’re having trouble taking your medicine as agreed – you’re not alone, and we would rather you told us so we can help you get the best from your medicines without having to increase doses or change to stronger medicines," says Asthma UK’s in-house GP Dr Andy Whittamore.
Studies show 45 per cent of people with severe asthma who are prescribed steroid tablets don’t always take them properly, and 88 per cent of people with severe asthma don’t use their inhalers as agreed with their healthcare professional. This is often because of worries about side effects, but can be due to all sorts of concerns.
Have concerns or unanswered questions about your medicines stopped you wanting to take them?What kind of worries would it be useful for you to share with your healthcare professional? Being open with them will help them understand whether your treatment is working as well as possible, and if not, why not, so they can make any changes necessary. If you have an honest conversation, you may even end up on a different kind of treatment – and you might feel more comfortable with that.
3. Look after your health in other ways
Having a healthy lifestyle is important for everyone. But when you have severe asthma, there are particular benefits to looking after your health as you may be at increased risk of certain other conditions:
Prevent weight gain
Taking steroids in tablet form can be linked with an increase in appetite, which can lead to weight gain, which in turn is connected to other health conditions, such as heart disease. And people with asthma may be at raised risk of heart disease anyway. Being overweight can also increase your chances of having gastro-oesophageal reflux disease (GORD), where stomach acid leaks up into your gullet and can irritate your airways, making asthma symptoms worse. Having a balanced diet and building activity or exercise into your day, if possible, can help you keep your weight down. Speak to your GP or asthma nurse about healthy eating and increasing your activity levels in a way that’s realistic for you.
Smoking puts you at risk of asthma attacks and can stop your asthma medicines working so well. And in the long term, it raises your risk of many other diseases, including COPD, a condition where your airways become inflamed and the air sacs in your lungs get damaged, causing your airways to narrow. This makes it harder to breathe in and out. People with asthma should never smoke and should avoid being around secondhand smoke, too. If you’re finding it hard to quit, speak to your GP, who can offer support.
Deal with stress and low mood
People with severe asthma tell us they are more likely to feel depressed and anxious. This is common for lots of people with long-term conditions that need a lot of patience and energy to manage. But 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.
4. Take action to cope with bad days
Following a list of things you need to do to look after your asthma may seem a big challenge, especially if you have days when you feel down or unwell. Here are some tips for dealing with the more difficult times:
Speak to your healthcare team about ways you can get into a good routine with your medicine, so it’s almost effortless. "It’s a good idea to link taking your medicine with something else you do every day, like brushing your teeth or having a cup of tea when you get home from work," says Sonia Munde, Asthma UK’s Head of Helpline.
If you’re finding it hard to take your medicine as agreed with your HCP, talk to your GP about ways that could help, especially when you’re out of your usual routine. And think about other ways you could make life easier. For example, you could make some batches of healthy food on days you have more energy, and defrost them to cook on days you don’t feel like preparing meals.
Note down the benefits you get from looking after yourself well
Keep this in a place you see often – a paper copy on the fridge, a sticky note on your iPad. What sort of things mean most to you? For example, being able to socialise or travel, having the energy for work, playing in the park with your children, worrying less about having a potentially life-threatening asthma attack – and knowing your family can worry less about you too.
Give yourself advice
When it feels too much effort to do things like eating well, exercising and taking your medicine, imagine a friend comes to you and asks for advice on the same problem. What advice would you give them? Could it help you?
Gain confidence from the past
Think about other times you’ve overcome a challenge – whether it was with your severe asthma or something else. What was it? How did you feel at the time? What helped you cope and deal with the difficulties then? Perhaps it was asking others for support or making sure you got plenty of rest. Could you try the same things now to support yourself?
5. You can ease your worries about the future
It’s natural to have concerns about a serious long-term condition like severe asthma. Here are some of the most common ones that people with severe asthma have shared with us over the years:
I’ll always feel like this
“Asthma can change over time for all sorts of reasons,” says Sonia. “For example, stress can make it worse, and changing hormone levels in women during pregnancy or menopause can sometimes trigger symptoms. So even if you are putting up with lots of symptoms at the moment, that doesn’t mean they’ll never improve.”
Getting your treatment right can take time, too – your healthcare professional may still be trying to get the best possible combination of medicines for you.
I’m worried about what will happen if my asthma gets worse
For some people, severe asthma does get worse over time. This is more likely if you don’t follow the treatment plan your healthcare professional has given you – so it’s very important you keep taking your medicine as directed, even if it doesn’t control all your symptoms.
But unfortunately, some people with severe asthma find their symptoms get worse even when they do take their medicine as prescribed. Remember that your healthcare professional will continue to work with you to find the best possible ways to manage your asthma if it gets worse. Having a good relationship with your healthcare team is so important. The more comfortable you feel about talking to them, the more you will get from each appointment and from your treatment.
There’ll never be effective treatments
Even if you don’t get the same benefits from your medicine as other people with asthma at the moment, remember scientists are working on new treatments for asthma all the time, in research that’s supported by Asthma UK. So there may be a treatment in the future that works better for you. Keep speaking to your healthcare team about what’s available to help you.
“I’m coping a lot better with my asthma but my medicines are not quite right yet. I’ve been in hospital 13 times in three years and the last time I was kept in for four days. I’m monitored at the hospital every three months now and I see my asthma nurse every six months. I’m hoping we can get my peak flow back where it should be.” - Joanne Beecroft, 36
6. Get support
There is evidence to show that people with good support networks can manage a long-term health condition better. Having support – both practical and emotional – is a vital part of managing severe asthma. That can mean support from friends, family, colleagues and your boss at work, and from your healthcare team, which may include physiologists and psychologists as well as your GP, asthma nurse and a hospital consultant.
Everyone is different, and we all thrive with different kinds of support. It is worth thinking about what kind of support is most useful to you – have you got people you can share your bad days with, people who will cheer on your good days? Are you confident you can count on your healthcare professionals?
As severe asthma may mean you have to adapt your working life, or even retire, finances may be difficult. Severe asthma can be considered a disability so make sure you find out about the financial support you may be able to access. Even on bad days, having the right support in place can help you feel more positive and in control.
“Having severe asthma should not control my life and I won't let it. I’m a very positive person and I try to remind myself there are always people who are worse off. I’m in a fortunate position as I have excellent medical care and an understanding GP. I know I'm good at managing my condition and I take it very seriously as I have to. I can't afford to be complacent. “ - Celena Dell, 34
Don't forget, you can always call our friendly asthma nurses on 0300 222 5800 for support and advice. Our Helpline is open weekdays, 9am - 5pm.
Last updated November 2016
Next review due November 2019