0ne of the things that come up in the meeting at Asthma Uk on wednesday was that People who 'suffer' from MS called themselves MS shift shift.ms/ I been thinking about this ever since. I personally don't like the word 'suffer' makes you sound a person who is '' to experience pain, illness, or injury' to become worse because of being badly affected by something. That's a dictionary definition what does it bring to mind when people label us as asthma suffers. Yes these people with MS have a disease but that's only a part of them. So I like the word MS shift shifting to me means to get rid of in the process of. So what do you want to be called without not making small of asthma as could be a serious illness maybe even deadly. I what another name I am me I just have asthma like I an a woman but I am a brownie leader, a singer, a crafter, a good cook yes I have my fault and yes I have another life long condition IC But like the people on MS shift it doesn't define me. Thats not me just a part of me. I am managing my asthma well. That's one of the goals of asthma uk self management. I couldn't do this without the help of my GP, Asthma nurse, helpline and asthma forum. So people what do you think?
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elanaoali
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Hi I know someone with Parkinsons disease. Apparently they call themselves Parky's! I think that is great. x
As long as they don't call ass sthg we're ok..joking 😃 I don't know a good name for the forum to make it sound positive something with Breathe I think like Just Breathe or Breathe simple..sorry if I'm not much help. Thank you for what you are doing xx😊
We all "live with asthma", i.e. we don't let it stop us living.
I agree with Gareth. People who have asthma are known as asthmatic, and have been for decades - the term was being used when I was a small child, and I'm now in my fifties.
Re usage of the word 'suffer'. According to my dictionary (Chambers), 'suffer' is defined primarily as 'to undergo: to endure: to be affected by ...' Which just about sums up what we go through. Yes, it can mean to feel pain, or to sustain injury, etc but as with so many words in the English language it's a word that can be applied to more than one situation:-). The primary meanings, however, are really rather applicable to anyone with a chronic medical condition. As Mark_in_Wales_CVA says, we live with the condition, we try not to let it stop us from living. We endure it - or we try to
I agree with Gareth. I've got asthma, I'm an asthmatic. If someone asks me what's wrong I don't beat about the bush - I tell them I have asthma. I'm not ashamed of it, perhaps exasperated but not ashamed. Wish me and my son didn't have it, but we do.
Sounds like Asthma UK is maybe getting distracted with PR.
Hi Angievere The meeting was very interesting and although quite technical I didn't feel lost or left out. Just a group of people with different skills and talents. We all introduce ourselves and I introduced myself as the ' one who uses the forum'. The upshot of it was technical but how to move the forum forward into the future. How to make it better. I will know more when I get the minutes from the meeting. It was lots of swapping of ideas like the MS shift one. A workshop answering so questions posed to us.
I felt very welcome and valued. Next step the forum users. So pleased to be able to serve in this way. As a christian God meant my asthma attack for good not evil and look where its taken me to you lot and asthma UK.
When I signed as a SUFA speaker they suggested I didn't use the term asthmatic as it kind of defined us. They just said say "people with asthma", like people with fair skin or long hair. It is a part of my life but not all of it. I am more than that!
Er - and what is wrong with being defined as asthmatic? It's what we are! I hate it when this sort of argument is used. SUFA, get real! People have to come to terms with the medical condition, both those who do and those who do not have the condition. 'Asthmatic' a one word term used to describe the three you are using instead - 'someone with asthma'. Same thing. It sounds to me as though SUFA is trying to make a name for itself by being deliberately 'different'. And they might actually make things worse. Stigmatising the term runs the risk of stigmatising the condition, which is what we don't want.
I agree we need for people to understand asthma. I just dont like the word suffer. I used asthmatic at the weekend better word of description. Like alot of things we have to continue to educate people. Young and old. Some of the old myths still are in peoples minds that of not been able to excerise but that
Was when there was inhalers like we have now. The challenge is to keep it current and educate the public. One size fits all doesnt work. We maywant to'throw the toys out of the pram' as my mum says when we are having a bad day. Like today it didnt really sink in that I was going to be on a preventer for the next six months until I reordered my preventer. Pooh! I thought expect it dont fight it be grateful for having this medication. I am well and getting fitter. So I thank Asthma uk,NhS and your all for helping. Being where you are understood is so important. Back to gardening when the rain stops.
I think for me I've had it for so long now (fifty plus years) that it's just a part of my life. Having had five years of no medication for it between the ages of three and eight, when I was eventually put on an inhaler the difference it made was so wonderful that I just couldn't bear to feel out of breath again (still can't). As a result the moment I feel my chest tighten I start monitoring it. Flare ups are rare largely because they are never given the chance to get going - the exception being if I go down with a viral infection and things suddenly swing out of control. But even then I am so aware it can happen that at the first sign of a cough as part of a viral infection I contact my local surgery and they will fit me in to get me checked out. If something is brewing we have a head start at trying to keep things under control.
Yes, I'm asthmatic, I know that, I accept that. But the medication I'm on enables me to live a pretty normal life so long as I keep to the parameters set by my own particular version of the condition. OK that means that there are some things I can't do, so it does affect the way I live (hence the word 'suffer' in that sense is appropriate), but there are lots of things that I can do. It's not something to be ashamed of, it's not something I feel I need to conceal (and never have done, even as a child) - it's just part of me.
I admit that for you (adjusting to the fact that you need a preventer) the word 'suffer' might seem rather negative at a time when you are looking for positives. Stick with 'asthmatic' - it's a useful term and one that I've used for most of my life
Thankyou for your thoughts it show that self management is the key and you have a very good GP surgery behind you. A voice of the experience done that Got the T shirt is a valued individual. That's one of the reason why we have this forum to help others. Thank you
Well done and thank you for attending. I would have loved to go as I am quite passionate about the forum! I joined years ago, it used to be much better when Asthma UK ran it in-house. The posts were arranged differently and there was a very friendly feel to it - people got to know each other and were very supportive. I still have a friend I made on the Forum - we keep in touch now via FB.
I appreciate Asthma UK moves with the times, but I don't think changing the Forum was a step in the right direction. At the same time, they stopped the Asthma UK childrens holidays, my son attended two of them years ago and they were absolutely brilliant. There was no explanation why they were stopped - presume it was funding.
Funding is a big issue as they do alot of research and they aren't a big charity with only 70 staff and half of the head of were in the room at this meeting. All contribution to what people thing email Andrew Proctor AProctor@asthma.org.uk more than welcome to receive any input. A very honest and open gentlemen was my impression of him.
The new way its run was only started 8 months ago. So I have no experience of the old way. I said the emails to my inbox were fine but on a mobile you can see where they are coming from. I prescript to two forums Asthma Uk and British Lung Foundation
There were four different threads on the old forum: general asthma issues; children and parents; severe and brittle asthma; and a non asthma thread (if I recall correctly). The other thing that was good (and which I really miss on this version) was that when a new response to a posting was added, the post concerned went back to the top of the thread - because it had become current again. That was really quite useful. It meant that if new people searching for subjects came across something that was relevant to them and put in a response, that posting (which might have been made a year so earlier) went to the top of the listing and the topic became 'live' again, complete with old postings and any newer ones that were added.
To be completely fair though, there are some aspects of this new format which have been better - or they have for me (possibly not everyone). As a well controlled moderate Asthmatic I tended to avoid the 'Severe/Brittle' thread in the old system. With this system I have found myself reading some posts from severe asthmatics, because it's very often not clear from the heading that they are severe. As a result I've learnt a number of things I didn't know before and have even felt able to contribute to the topic in question occasionally. With the old format that would almost certainly not have happened.
But I still think moving a posting to the top of the list when a new contribution comes should be brought back. This particular topic is now on page 2. Anyone new, or more particularly anyone who has just returned to the forum having been away for a while, would almost certainly not see it as a result and therefore might miss the chance of contributing something else to this discussion. Which, given the subject and the meeting that brought it about, would be a pity.
As elenaoali wrote above, the best thing you can do is to email Andrew Proctor at AsthmaUK (email given on this thread, I think) and make him aware of your feelings on the matter.
Perhaps we need to call ourselves something to tie us in with Leann Rimes' song "how do I live without you...How do I breathe without you?" I imagine she's singing it to her ventolin inhaler!! Good night folks x
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