Like others who live with periodically debilitating health conditions, many allergy ‘sufferers’ object to being labelled as ‘sufferers’. Yes, on occasion they do ‘suffer’ as a result of their allergies, sometimes quite acutely, but being labelled as a ‘sufferer’ suggests a degree of victim-hood that they are not prepared to accept.
I have heard this many times from allergic friends and colleagues – check out Ruth at What Allergy? for example. But now Lindiwe, who has allergies to more foods than many of the rest of us have had hot breakfasts, and who posts a great blog called The Allergy Table, is doing something about it – like creating a new term to describe people like herself and Ruth who live full and exciting lives, even though they have life threatening allergies.
Lindi calls herself an allergy reactor.
And here are some of her – and Ruth’s – thoughts about what that means.
Lindi:
‘Allergy reactor’ means a person who has an immune response to allergens; which implies faultlessness.
‘Allergy sufferer’ means a person who has a negative experience because of allergens; which implies victimhood, pain, misery, enduring.
Allergies can be tough, painful, severe, and having a reaction is not a great experience. However, many people who have allergies do not suffer in the day-to-day.
An allergic reaction is just a response, not a state of living. Let’s change the narrative from pain and misery to understanding and patience. Let the reactors decide when they’re suffering!
Ruth:
‘You are not your allergy.’
‘You are not anaphylactic. You do not have anaphylaxis all the time, nor do you have allergic reactions all the time.’
Ruth often quotes this admonition from Frans Timmerman, at the time he said it to her, President of the Dutch European Anaphylaxis Task Force. He believed that it was really important that those who were at risk of allergy and anaphylaxis should use the correct language to help them feel more in control.
And and then a few more, just to make the point and, maybe, help you to make the point to others.
People with allergies, like people with coeliac disease, or diabetes or arthritis – live with their allergies – they do not suffer from them.
Allergy reactors manage their allergies – they don’t suffer from them.
Allergy reactors control their allergies – they are not controlled by them.
While both Lindi and Ruth have extremely active lives which have nothing to do with their food allergies, they both write excellent allergy blogs: Lindi at The Allergy Table, Ruth at What Allergy?
In support of her ‘allergy reactor’ concept Lindi has launched an ‘I am a person behind the allergy’ campaign. The idea is ‘to provide allergy reactors with confidence surrounding their allergies and to reduce any embarrassment they may have. The campaign is centred around remembering that they are first and foremost people and that having allergies is only one part of their lives.’
Between now and the end of the month the campaign is asking people with allergies to upload photos to their social media platforms portraying who they are behind the allergy. They have already created a cool video – ‘you don’t look like you have allergies….’ – no – I am a person behind the allergy. Check in now and, if you do have allergies, upload your image.
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Thank you so much for writing this Michelle, it really does need to be said. I hate the term and I know others with conditions such as MS and Cancer don’t like it either. It makes us seem like we’re just sitting there suffering. We’re not. We are living full, active and positive lives, we just have to do a lot of stuff to stay safe and sometimes take medication to help us control the symptoms. But we are not sufferers. It is a phrase that gets used a lot because saying ‘people with allergies’ is more of a mouthful. So Lindi’s new phrase makes perfect sense. Let’s hope it catches on! I’m an Allergy ‘Reactor. There are some foods I react badly to, some foods could kill me, but I choose how I react to that knowledge. I choose live my life as fully as I can
YYYEEESSSSS…… So glad you agree – well, obviously I knew that you did anyhow – but agree with putting it out there. We are going to try and promote the term as much as well can so anything you can do……
You’re amazing Ruth, and being the change you wish to see in the world. Thank you for leading the way.
‘Allergy reactor’ isn’t a term that resonates with me. Nor is ‘allergy sufferer’ a great term either. Perhaps a contest to find the best name?
I constantly see that the concerns of the allergic community are, certainly as regards allergenic pollen, ignored. Yes, ignored on all levels.
People with allergies are not united; they are not organized; they lack much of, if any, political clout.
In this day and age, to be heard, unity is needed.
I think that one the problems is that allergy is so diverse, Tom – so pollen sufferers do not really share the concerns of food allergy sufferers, or milk allergy sufferers the concerns of sufferers from bee stings. But you are right on all other fronts.
All my life I hated using the term “suffering” but I didn’t know what else to use. The media says “allergy sufferer” so I just adapted. As I am getting older, I am finding that words truly matter in the way I see situations. I used to belive I was a victim, I suffered, but that is not the case. I react to certain things; from mild reactions (pollen, dust) to anaphylactic reactions (Peauts, Shellfish) . I am a reactor, and like Ruth put it, I also am responsible for ‘how’ react to my allergies; positive or negative. We have a choice to suffer or react.
Thomas has a point; it is hard because everyone resonates with words differently, and allergies are on a sprectrum, but to be heard we have to take ownership and come out of the darkness and into the spotlight. That is how I am reacting moving forward.
Lets change this narrative.
I think words do matter, Lindiwe – enormously. They can empower – or they can crush – which is why I agree that it is so important that you take ownership of them. In exactly the same ways as you take ownership (and thereby control) of your allergies. As Ruth says in her book, she would not be the person she is – and would regret that – if it were not for her allergies. But she chose, as you have, to engage with them. I think you are both doing an amazing job so anything we can do to aid the cause…..