Limitations to desired activities affected the emotional wellbeing of many people we interviewed. Research has shown that limitations in function affect 70 to 100% of people with severe asthma. People we talked to described the feelings associated with physical inability—feeling disabled, less of a person, isolated, and removed little by little from life’s enjoyments. However not everyone saw severe asthma in such negative terms.
Ann just wanted to be able to do things normally.
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Oh, I’d love to be treated normal. Um, just to be able to do things that they did. My brother, he played cricket, footy and did gymnastics. My sister did gym. I would love to have been able to do the things that they were able to do and what other people do, especially now that I’ve suffered from taking the cortisone all my life. I look at people walking and I think, you don’t know how lucky you are just to get to walk or just to go do things you know. Wasn’t good at telling anybody, they-they won’t understand till it happens to them, if it does.
Wayne is sad that severe asthma does not have an easy fix.
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Disappointed. Disappointed at the same time because I’d rather have a broken leg, a broken arm, or something, and then you, you can fix it. Just to be told it’s asthma and oh hopefully they’ll be able to fix it within five to ten years with medication, like… that’s… no, that’s the disappointing bit. It’s not something that can be, be fixed, just take a tablet now and it’s done.
Marg tries to help others and understand her own situation.
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It can be emotional it can be everything, asthma can be one of all or any. But I do think that you can give a help to the human race by being, trying to work things out I think, trying to understand yourself. But I do have a great understanding of other people. I think I’m blessed with that from when I was a little girl. I’ve always loved people, I love their story and I can’t stand people to be in pain, particularly emotional pain. You know, if there’s any way anything I can say or do that will help I will do it, at any cost and I think maybe that’s why I’ve gone through what I did.
Michael found the diagnosis almost a relief and he doesn’t get emotional about having severe asthma.
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…but the relief at being told I was asthmatic, it was just a huge relief and I guess I got over the “why me?”. I mean, there’s no point worrying about it. It just is what it is. It’s not a life-threatening illness. It would be different if it was cancer or a major cardiac issue. I’d probably have a lot more questions and I think it’s a pretty standard human reaction to question “why me?” and then you get over it. It hasn’t been a major emotional issue for me since then at all.
Although Michael does not perceive his severe asthma as life-threatening, it certainly can be, and a proportion of people we interviewed spoke about their fear of living with a life-threatening condition and the emotional toll that takes, as well as feelings associated with reduction in physical abilities.
Shannon is scared just living her life.
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In terms of travel, nowhere. I’m just not game enough. I, and it’s hard with my back, but, like if I had to, I’d do it, but I just, I’m just not game enough. I’m too scared and that’s the horriblest thing, is that you shouldn’t have to be scared, you should, you should be able to, live your life the way you can. Instead, I have to worry about what the weather’s going to be or, you know, whose perfume’s going to make you feel horrible or, yeah, has someone cleaned the floor?
People with asthma may have mental health issues. Studies have shown that anxiety, depression and panic disorders are more common among people with asthma than in the general population. Depression and anxiety disorders are more common among people with severe asthma and may be either a result of, or a factor in the development of a person’s asthma. [Amelink et al 2014 ]
Jemma feels depressed and angry about having severe asthma.
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I’m still pretty angry about the fact that I’ve got severe asthma. It’s not something that I think I’ve ever really dealt with. Every now and again I get really quite depressed about it because I mean… because you have to have cortisone. I’m a diabetic and of course that means my sugars go up which means I have to have insulin. And because I have to have cortisone, my face swells up to twice the size of normal so I end up with this moon face, you know Goodyear blimp face really. So it’s sort of like I’m sad and angry and I think I’ve been sad and angry for the last six years and I think I’m handling it and then I’m not.
Ed knows he needs to keep the anxiety in check.
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I think anxiety can exacerbate it as it can any illness because your body is not, relaxed and going with the flow. Instead you’re fighting with something that’s actually preventing you from breathing so you can create a cyclic loop where I can’t breathe. I think I’ll panic I can’t breathe now even more. So, yeah, intervention from medical experts I think is the real way to-to address things.
Medications used in asthma can also affect a person’s mental state. Large doses of prednisone or prednisolone can cause changes in mood and behaviour, but these adverse effects appear to stabilise over time. See Managing Medication.
Karen found steroids hyped her up.
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Steroids can do amazing things as far as keeping you alive but do hideous things. But I can’t. I haven’t been off them now for four years at all. And prednisone kind of does the same thing, so it’s like where’s the party at night? They used to come round in ICU and go: “still awake, where’s the party?” And that’s it, I kind of go to sleep for a little bit, once I’m exhausted, and then you wake up, and you’re awake for an hour or so, and then you just nap the rest of the night. On and off.
Diana felt invincible on steroids.
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You feel, I’ve heard people, I mean people go berserk on prednisone. You feel terrific, you really do. You start feeling invincible. It’s good, it heals you, boy . It’s almost like a, I don’t know. It’s, you feel like you, for me, at one stage I didn’t want to come off it, because I felt so good.
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Long term, because I was on prednisone for such a long time it has affected my mental acuity. I used to be able to cook and I can’t anymore, it’s like in my head it’s like my thoughts have literally hit a road block. So cooking is just one thing that I know majorly affects. It’s majorly affected that, but there’s lot of things, lots of maths. And I have a degree and I worked hard for it, but I couldn’t tell you much about it now, because I hit that roadblock and it feels like a physical roadblock in my head, and it affects a lot of my memory. Even now, short term memory. so at my worst, when I was on a huge amount, literally this was what my memory was like: on the phone to a friend, call waiting comes through, I’ll say, OK I’ll just check out who this is and I’ll be back. I got to the other person, I totally forget I was talking to the first person, so I’d have the conversation with the second person. And then later that day I’d call the first person and have exactly the same conversation because I’d totally forgotten that I’d spoken to her anyway, so I’d call up and go so… and she’s like, yeah I know, you called me this morning. And I sat listening to call waiting for half an hour before I gave up. And I was like, what? I called you? When? And yeah, it was horrible, really bad.
Psychological factors may trigger asthma symptoms and affect patients’ asthma symptom perception, and also may influence a person’s adherence to their treatment routine. High levels of asthma-related fear and panic can make asthma symptoms worse. Anxiety and hyperventilation attacks can also be mistaken for asthma. Some people in our study talked about being able to recognise the differences between panic, fear and asthma symptoms. Rachel says she can tell the difference because “panic attack affects your head and everything”.
The uncertainty of the future was an issue for several participants. Some people brought up the subject of death and dying. The realisation that, despite doing everything possible to manage their condition, it might not be enough was quite common in their thoughts.
Clive finds it hard to plan.
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We’re in a bit of a no man’s land, in that regard. Wondering what’s going to… where the next few years is going. You know, what I’m going to be doing, you know. Yeah, there are issues around that and it’s been quite, at times quite stressful.
Kim accepts that there’s no magic bullet for her.
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I think I’m managing what’s going on with me to the best of my ability that I can at the moment and so is [my carer] thankfully. It’s just that the management is not going to continue to keep me alive. I have to be really frank on that hey because you know I died in the driveway. So yeah, I don’t know how I could manage it any better. I don’t know how there’s anything that I could do or change and this is a big thing that they’ve been going through with me now and there’s not anything like they’re going well we’ll start doing this. I’ve been doing it for months. What are you on about? It’s not working.
Tony sees how fragile life is.
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It’s a bit of a shock someone telling you like that. You’re not in a good place. You’ve got bad asthma and you’ve got to look after yourself. If you don’t, you’re going to be dead. You’re going to be dead in a few years’ time. You’re going to have a sudden bad attack, and you know, you’ll be not here. Of course, the wife hears that and she sort of says, well that’s it. She says, you’ve got to take your medication, you’ve got to take it religiously there. Make sure you do that. And she is quite, she probably has kept me alive the last 20 years, the wife has, she’s probably kept me alive. I’m sure she has, but she’s always a lot more proactive than me, anyway.
Link
Amelink M, Hashimoto S, Spinhoven P, Pasma HR, Sterk PJ, Bel EH, ten Brinke A.
Anxiety, depression and personality traits in severe, prednisone-dependent asthma
Respir Med. 2014 Mar;108(3):438-44. doi: 10.1016/j.rmed.2013.12.012. Epub 2014 Jan 2.
