1 in 20 people with asthma have severe asthma

“When I was first diagnosed with severe asthma I was under the illusion that in six months I'd be fixed”

Vickie Taylor, 27, is working with a team of specialists to manage her severe asthma

“I've had asthma since I was a toddler, and although I’d been calling out the paramedics several times a week since I was 22, I was only diagnosed with severe asthma last year, aged 26. 

“Trying to get my first GP to take me seriously was horrendous. I found I was always out of breath, even when taking medicines properly, and I felt exhausted. Steroids didn't help and made me feel nauseous. I felt embarrassed because I was wheezing and clearing my lungs in public, and walking was becoming a nightmare.” 

Asthma symptoms affected every part of my life 

Vickie Taylor“Over the course of a few years I went from rock climbing, mountain biking, marathon running and teaching kids dance to being unable to walk upstairs. On bad days I couldn’t walk the 18 steps from my bed to my bathroom. 

“I also found talking difficult. I would be breathless and trying to disguise it around people and having to visit toilets to use my inhaler. 

“My family became very distressed. My mum would call and if I was sleeping and didn't answer the phone she would come round because she was worried I had ended up in hospital. 

“In 2015 I was rushed to hospital, barely conscious, with a serious asthma attack and chest pain, and ended up being admitted for three weeks. I was told I'd had a very serious asthma attack and pleurisy, and had I waited longer it could've been a very different outcome. 

“On rounds my consultant visited me and told me I should've been referred to him years previously, and that I had severe asthma.” 

I felt misunderstood 

“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. One of my ex-friends would walk past an ambulance and say, ‘Look Vickie, there's your personal taxi!’ and would ask me to stop wheezing, which was upsetting."

Changing my thinking 

“I've also tried to harm myself and ended up being referred to a mental health team for depression. I remember being in hospital feeling at my lowest. I felt humiliated, upset and in pain, and I just decided: this can't go on - my mood and stress aren't helping me, they’re hindering me. 

“Mindfulness and Dialectical Behaviour Therapy (which focuses on changing unhelpful thoughts and accepting yourself) have also helped. On YouTube there’s a relaxation channel with eight hours of calming music, and this coupled with a bubble bath can help. Colouring books or cards on the go are great too. 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 colouring books - a rubix cube is excellent. 

“Use your senses to enjoy a scented drink or a nice-smelling product, concentrate on deciphering the different smells coming through like you were wine tasting. Do this for three minutes and you'd be surprised how calming it can be. I love to learn so watching physics and chemistry videos helps keep my mind ticking over, and baking when I can." 

Now I have a much better relationship with my healthcare team 

“My new GP is amazing - I can cry in front of him, and he understands my asthma. I feel much better in his care and with my consultants. I have four multidisciplinary ones: an asthma specialist, an ear, nose and throat specialist, a gastroenterologist for my reflux, and an asthma psychologist - she's amazing too. 

“I can vent to my team but also learn things, which is excellent. For example my psychologist explained that everyone is anxious at some point - if we weren't, why would we check both ways before crossing the road? That's anxiety too but we class that as normal, so when someone says you’re anxious or panicking, don't think they are saying ‘it's not asthma’. The specialists work as a team and we are currently exploring bronchial thermoplasty. 

“I note down all my asthma attacks and symptoms, and get a letter from my GP to take with me to the specialists so they know what he's dealt with between appointments. Between appointments I make a list of any questions or worries, so I can hand it to the consultants and not worry about forgetting something. And I keep a nebuliser diary so the doctor can gauge what's been happening. I find I get more answers and information when I've compiled a list - before I would be all flustered and if I couldn't breathe I'd lose my train of thought and leave with unanswered questions.”

Working through different treatment options 

“When I was first diagnosed with severe asthma I was under the illusion that in six months I'd be fixed. When that wasn't the case, I think I had a hard fall back to earth. I still haven't got the right medications, although 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 at basics and move forward, which we've been doing for a year now. 

“I don't see the point getting worked up because you don't get anywhere. You have to stay level-headed and hope for the best. I'm not going to lie - being level-headed can be tough. You have to have the motivation to say, ‘I feel rubbish, but it could be worse’ then think of the things you do have like having a roof over your head, food in your tummy and a bed. You know it's a bad situation but you have to evaluate how bad it could've been and realise you’re lucky. 

“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 doctor is there to support you.”

Last updated September 2016 

Next review due September 2019