Work and difficult/severe asthma - sharing our experiences

Hi everyone,

Reading the boards recently, it seems like the theme of troubles at work with asthma is a pretty recurrent and common one. Most of us with moderate or severe asthma seem to have come across problems of one sort or another at one time or another. Certainly, when I was working I can remember having significant problems at several stages.

It occurs to me that as a group we have a lot of shared information and experience on this topic that could be useful to others. I was wondering how people would feel as a group if I were to try to maintain a list of volunteers who would be willing to share their experiences on an individual basis with others who also have difficult asthma and are working in similar areas or professions.

The way I would envisage it working would be that people who were willing to be involved would e-mail or PM me with a few basic details describing the degree of their asthma, the sort of problems they have had, and the field that they are working in. The idea would be to try to get as many people as possible who are currently working (my knowledge, for example, would be a little out of date and not that helpful as I haven't worked for over 18 months). Then in future if I was approached by someone who was struggling with a particular work- and asthma-related issue, I would be able to match them with someone who was either working in a similar field or had had similar sorts of problems in the past.

All the personal details would of course be kept completely confidential by me and would not be published anywhere on-line. I would probably eventually envisage setting up a web-site to make people aware of the scheme and allow them to contact me, perhaps also including some information on employment rights, the Disability Discrimination Act and other useful info as well.

The idea is similar to the matching scheme run by Careers BMJ, the Careers journal of the British Medical Association, although that only caters for doctors (and never managed to match me with another doctor with brittle asthma - where were you all?!). I think it could be a really valuable source of advice and experience, if we can get enough people involved.

Just to reiterate, I would keep all personal details totally confidential and would not pass them along to anyone else - if I did have a 'match' who would benefit from talking to someone who had previously registered their details with me, I would pass their details to you, rather than vice versa, and it would be up to you at that time whether you did feel that you could help and wanted to get into contact.

What does everyone think?

Take care all

Em H

34 Replies

  • I think it's a fantastic idea. I know I've struggled in the past with trying to find ways round doing my job when my asthma is playing up. I still struggle now with taking time off sick when I need to but trying to keep my sick record ok. I'm sure my sick record has affected me not being able to get another job, amongst other things, as my feedback is always so good at interview.

    I'd be happy to put my name forward if it went ahead.

  • am happy to help if i can Em

  • I'd be happy to help even if its only for someone to talk to who has had similar problems. I still can't believe the problems I have with work especially as I work for a large company manufacturing asthma medication. Just drop me a pm to lt me know what the next step is.

    Take care


  • I had to give work up as I was having so much time off and, up on returning, having to do a lot of catch up. This was putting more strain on and exacerbating the problems. Eventually, my Consultant asked if I could afford to take early retirement. Luckily, I could. If I didn't, I could see myself, now, poking up the daisy's.

  • Hi Em,

    I would be happy to be involved - sorry I never registered with the BMA scheme :-)


  • Yes, can try to help but as only work P/T permitted work can't help with f/t issues though I would like to be able to work f/t!

    Any Mad Ecologists out there???


  • Thank you very much everyone who's answered so far... I am getting quite excited about this one, I think even if we can't cover many professions, anyone's experience could potentially be helpful to someone.

    Also if you are working in a similar area or for a similar employer, you could have things to offer, eg if you are working in the the Public Sector you could offer support to other public sector employees.

    If anyone has experiences - positive or negative - of things like Access to Work, that would be useful too.

    Don't worry if you don't feel that you have enough expertise or knowledge about employment rights and so on - I am not asking anyone to give professional advice! I am envisaging a web-site including links to various sources of information on the net about employment rights and the DDA. The personal contact bit is really so that we can share experiences and so that people feel that they are not alone with their problems.

    Don't worry either if you indicate an interest now but are not sure whether you will actually be able to do it when the time comes - even if I have your details and have 'matched' you with someone, I will ask you whether you feel that you can get in touch at the time, too, and if things are too busy/hectic or you are not well, that is fine.

    I'll do some forms with some space for basic details and PM them to those who have expressed an interest. Thanks, guys!

    Take care all

    Em H

    PS Any students interested in helping out, too? Going away to Uni for the first time with difficult asthma is a scary experience - I'm sure there would be call for people to share their experiences about this, too.

  • This sounds like an excellent idea, and is probably useful enough to be passed on to AUK to see if they can set aside an area of web space (or certainly forum space) for it.

    Would you like me to speak to Webed on your behalf, Em?

  • Oooh yes please, Steve, that would be excellent!

    <jumps up and down excitedly>

    <realises her lungs don't really like her doing that>

    Thank you!


  • I would be all to happy to be involved. I had some real battles with my employer and it ended up with me resigning because I wasn't able to carry on working. I was working in admin.

    If I could give support to anyone who was going through something similar it would be good.

    EmH I think this is a fab idea


  • Cool; I'll give him a ring tomorrow.

    There's a currently disused, hidden ""talking point"" category called ""Kick Asthma Volunteers""; this has long been superseded by the web site and message board I run on AUK's behalf. I'm sure we could see about getting that opened up and used - either on an opt-in basis to help you collate information, or on a public basis to enable the information to be displayed.

    A thought: perhaps you could use it and create a thread for each occupation. Put all the info you have in an opening post (which you can modify as needed) and allow anyone with any queries to post in the appropriate thread. Then your experienced folk can respond, and you can also PM any contact details etc. as needed.

  • I'd love to be of help Em. My asthma is moderate not severe but have (I think) successfully worked through the battles with employers and having to disappear off duty during a shift for the NHS. Also had to go down the lines of industrial related disease of a kind.


  • Hi all,

    Great idea about sharing work experienced asthma probs Emily.

    I would be happy to exchange experiences, hindsight (!) and volunteer help if possible with similar folks like me.

    Fortunately I’ve been able to continue working full-time with severe asthma, - just - although has been touch- and -let’s give- up last couple of years or “how about working part-time?” In my line of work part-time hours equate to full-time!


  • Hi EmH

    Have pm'd you. Like the others I think this is a fab idea. Although my asthma is also only moderate I've worked with my current and previous employers to put in palce reasonable adjusments to help me work as effectively as possible, including working from home a day a week.

    As I work in HR I'm also happy to provide support wiht regards to legalities and the DDA etc, and what support a reasonable employer would give (sometjhing a tribunal would look at)

    Fab idea, and fab that you're feeling better and wanting to put it in place!

    Cal x

  • Emh, good plan. Maybe it could include support for those who have been told to give up work too. The hardest thing I have to cope with now is not working, and listening to all my friends still hard it chatting about jobs, either that or they avoid me totally lose lose situation.


  • I agree, Bex, when you really want to get back to work it can be really hard to hear other people talking about it... I think I find it even harder, though, when people deliberately avoid the subject because they think it will upset me! As you say, lose-lose situation.

    I do think it is difficult for some people to deal with the way our lives have changed since becoming unwell. I know people worry about what to say to me and if they are going to upset me. Personally, I much prefer it if people just treat me normally, but I know that's easier said than done sometimes... I sometimes don't feel like I have much conversation if I haven't been doing much because I've been unwell!


  • EmH I know what you mean, I think the biggest problem is that for years I have been the life and energy of every party, full of energy, bouncing around I never stopped. I could cheefully work 16 hours on a night shoot drive home for an hour sleep for 5 and be back on set demanding a bacon buttie before another 16 hours of work. At conference I can recall on meny occasions being part of select group who had to be vacumed around by the early morning cleaner cos I was still holding court on a sofa in the bar area somewhere. And this was only 3 years ago. The sudden change has knocked people flying, they don't know what to do or say. It seems beyond belief that something like asthma could randomly do this. Not helped by the fact my brain is still in whirlwind mode talk about the mind is willing weak. I guess the other problem is they think if I can get that bad in such a short space of time then surely I won't be around next conference, ha well they are not getting rid of me that quickly :)


  • Hi EmH,

    I think this is a fantastic idea, i nearly handed my resignation in (I work as a receptionist for the NHS) because of my severe asthma but fortunately rang the Asthma Helpline the day before i did and am so glad i did. It sounds stupid but i didn't realize that i was within my rights to ask for certain cleaning products not to be sprayed in my immediate work area and they made me feel 'normal' and that i have a right to work etc. Without that advice i would have just given up and my world would have shrunk, so i think its a fantastic idea and will help in any way that i can.

    Go EmH! You are a star!, love Lois

  • What a great idea! I would be happy to take part. I feel I have a reasonable situation at work now, but it has taken a while to get there, but it would have been great to be able to ask someone else working in the NHS what arrangmements they had sorted out. Though I am wondering about asking if I could work part time!

  • EmH yet again a chuffing good idea of yours!!

    Finding someone like you in the same situation as me has helped me through a lot, as we have to watch on a daily bases when in hosp, which is far too often, people do the job we trained hard to do, were bloody good at and enjoyed doing, then had so harshly snatched away?

    Andrea xx

  • Em..

    i'm just about to dash out the door but count me in! as student and med student!

    gr8 idea


  • Hi Em

    This sounds like a really good idea, I am going to pm you my details in a min.


  • Count me in - are there any teaching assistants ( am not employed at mo) out there?

    I only qualified last yr but have since been told not to work both by RBH and local cons esp as i work in primary so risking picking up more infecs.

    Was told my kids head teacher and a friend who is a deputy that altho im qualified and have a good skills range my sickness record would prevent me from employment .

    Em H you star here comes my details.

  • Count me in. I am a student and think it is a great idea. uni hasnt been all plain sialing due to asthma. would be glad to help.


  • THis is def a good topic = if anyone has any tips on how i can make my work more understanding please let me know!! Its awful how some people are treated by htere employers.


  • Hi Em

    I am new on the site and the whole topic of asthma is all new to me, having only been diagnosed earlier this year. I have been going through an awful time with my employer already. With union support, I am rapidly learning a lot about DDA and other associated topics. I would be more than happy to share these. My experience is all too fresh and I appreciate how difficult poor management/HR support at work can be....and I am only a moderate sufferer. Please count me in.

    Alan J

  • Hi Alan,

    Welcome to the Asthma UK fora - do pop over to Camping in the 'General forum', which is our chit-chat and socialising thread, and introduce yourself and 'pitch your tent'!

    I am sorry to hear you have been having so many problems with your employers with regard to your asthma; it's sad that it's still such a misunderstood condition, and that employers are often less than supportive.

    Thank you very much for volunteering to share your experiences and knowledge and contribute to this scheme; it is very much appreciated. If we stick together then maybe we can get our employers to be more helpful!

    To anyone else who has been wondering where this idea is going - I am in the process of trying to get it off the ground. I am just working on some of the practical details of whether the scheme will be able to be hosted somewhere on AUK, as Steve has suggested, or whether I will have to set up a site elsewhere on the net. Hopefully you should all be hearing more in the next few weeks!

    Take care everyone,


  • Bouncing to top - hope it helps becky_m80 !

  • I not been around for a bit but i think this is a great idea. Im currently battling with OH at uni. Would this be beneficial to students who are banging their head against a wall??


  • Count me in too - Em I'll message you details soon (just on the end of lunch now so will have to wait till tomorrow probably!) It's a really good idea, I went through a nightmare with my old employers but my current ones are fantastic.

    I hope this can really help other people...

  • I think this is a brilliant idea. I would be more than happy to help. Working with severe/difficult to control asthma can be quite a big hurdle to overcome.

    Carolyn xx

  • I'm a qualified and experienced HR Manager - I'm happy to help with employment law queries - especially related to illness/medical conditions and the workplace.

  • Work and Asthma

    Hi I'm new to this forum and just joined asthma UK, I hope to improve my asthma and take it seriously by changing my diet making sure I religiously take my preventer and improve my general health.

    I am currently in dispute with my employers who are one of the largest national British company's. I have so far got to a stage 2 warning and essentially and mainly because of my asthma when exposed to chest infections sore throuts etc..and is normally the case I have to take antiB and steroids.

    My line managers have treated me appaullingly and have no understanding of asthma or are completly ignorant of it. This is causing me lots of stress and I now possibly might have to have an op for a hernia.(Only found out I had one this week when I went to see the doctor)

    I only have to have more than 1 occasion off work or more than 10 days in one interval and I could face dismissal!!!

    I approached my manager today and asked him if I had to have the op will I get dismissed, his reply was ""It's likely""..OH talk about put you at ease....I am also a new union rep too and trying hard to find info under the DDA etc to try and nobble these ""unsympathetic uncaring creatures who clearly are not intrested in my welfare""...

    Any good and preferably factual advice really welcome..

    Thanks again for reading

  • Iused to work for the Social Work dept of an English county council. As my asthma is triggered by colds/viruses I regularly had lung infections (often October and Feb for some weird and wonderful reason) and had the typical barking cough. If I was off my line managers complained, and if I went in they complained about the noise. I couldn't win. But my problems with my employers re. asthma was nothing to the appalling treatment I had when I had 2 months off with depression and then went back and was honest with them. They were the reason I had to stop work.

    I'll happily share anything if it helps.


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