Now here’s an idea for you all. Should people with life threatening allergies, severe eczema and asthma and coeliac disease be claiming disability allowance?
This isn’t something that I would ever have considered before but someone suggested that I should be claiming disability allowance recently. I didn’t agree. Why should I? I’m completely alright, I live a very fulfilled and normal life and I don’t let anything stop me doing what I want to do.
I am totally able to cope on my own. It’s not something I can ever see happening, but…
She then said, “But why should you just cope? You can’t just go out for a meal, you can’t eat out safely anywhere really, you can’t go on holiday easily due to your asthma, you can’t go anywhere without your medication, you are regularly out of action after an attack…” and she went on about how someone in a wheelchair with a physical disability probably has more freedom that me! Ending with, “I know I could not cope being you, I just couldn’t live like that.”
Again, I would disagree. I don’t want to be different. I just want to be like everyone else. I don’t want extra special treatment I just want to be normal, to blend into the background and just get on with my life.
I guess people who use wheelchairs feel the same about the labels they are given, like wheelchair bound – a horrible term because actually wheelchairs allow them freedom they wouldn’t otherwise have.
I am thankfully able bodied and enjoy exercise. I can eat all fruit, most vegetables and I think all meat and fish. Basically if it’s not processed and simply cooked, I can eat it. You could say I’m on the ‘Pick it, Kill it’ diet. I love this saying (thanks Alison) which basically means if it’s fresh, grown locally or responsibly reared well-fed meat it’s OK. As long as it’s not nuts, dairy, tomatoes, celery or soya I’m fine.
If it’s been in a factory and you don’t know what’s happened to it, don’t eat it. If horse and other animal meat can find its way into beef products, what else is in processed food that’s not labelled? Can we really trust food labels at all?
Are we allergy sufferers? or should we avoid using this term?
I have to live with what life has given me. I have to cope and on the whole I really enjoy my life.
This subject is also very topical because I had a lovely email from a reader just this morning which has highlighted something I am doing on this blog that I have previously tried to avoid doing and that’s referring to people with allergies as sufferers.
This is what he said and I totally agree:
“I read with interest and recognition your article on discrimination and allergies. Finally, someone who not only ‘gets it’, but also write about it. However, then I noticed that you use the term “suffers” in conjunction with allergies. I think that the use of that term contributes to the discrimination. If the general population see those with allergies as suffering from them, they can assume that nothing they do will make a difference, that we are pathetic and somehow “less than” them. I am a person who has allergies. If I am in a supportive environment, I need not suffer. If left to my own devices and able to avoid what I need to, I am perfectly happy. I don’t suffer from allergies. I suffer from people’s perceptions of allergies.“
He’s completely right. It’s a condition that is totally manageable in most cases, with support, guidance and the right advice.
‘Suffering’ is a negative word and on the whole I don’t suffer, if I’m being careful and avoiding my allergens. However, at the moment something weird is happening and I am suffering and reacting to stuff I’ve cooked myself, not nice, but that’s another story and together with Mr What Allergy we have our magnifying glasses out and are on a detective mission to get to the bottom of this latest flare up in my condition.
And there is nothing really wrong with me. Well, that is apart from the multiple allergies, recurring eczema, sometimes debilitating asthma and occasional and thankfully rare anaphylaxis. I can walk, run (OK jog), do yoga, cycle and pretty much anything I want to. Exercise first thing is safer for me as it avoids any food reactions. I can sing (ask my family, they may debate this one), laugh, drive, catch the bus without needing help. I can do everything… and I CAN eat EVERYTHING else that’s been picked or killed (as long as I avoid my allergens)!
So, what can’t I do?
- Well, I can’t just go out for dinner and order food straight from a menu.
- I can’t nip out in my lunch break and just grab a sandwich.
- Imagine a first date with allergies? How does one navigate that?
- I am horrible to buy presents for; not just any old chocolate and some smellies. Books or champagne will do.
- If you invite me to dinner I’m quite happy to bring my own, or talk through the menu with you, but you can’t do your favourite lasagne.
- Having a take-away isn’t easy
- Can’t go to an Indian restaurant
- Chinese is out too
- Most restaurants are too scary due to cross contamination and involve military planning
It certainly does make eating out very difficult, visiting friends loses much of the enjoyment and needs careful planning, attending dinner dances again needs special planning, shopping can cost more and it’s hard to find anything processed that I can eat, any catered event means I usually take my own lunch etc. etc.
Kids at school can end up being excluded and left out. Having to eat meals separately, not taking part in cooking activities, not getting food treats, not getting assurance that they will be safe in school.
You can’t just grab lunch on the go, you have to plan, be prepared and take snacks and lunch with you. You need to be aware of potential contamination at every step, crumbs on a train, spilt milk, dairy vapour in the coffee shop. Blah, blah, blah…
I often do feel different, like the odd one out. The weirdo in the corner with crumbling gluten free sandwiches, an apple and packet of crisps (always ready salted).
So clearly I often find life tough, but on the whole it’s not so bad. I am only whingeing now because my allergies are BAD at the moment but that’s all going to get better when I’ve worked out what it is.
Do any of the above constitute someone with a disability?
And this is a list of stuff that focuses on what I can’t do.
Focus on what you CAN do, not what you CAN’T
I can eat EVERYTHING else that I’m not allergic to and I can do anything I want to (apart from travelling to non English speaking countries, too terrified to do this). So, no I don’t think I’m disabled and I can’t see me applying for a disability allowance any time soon.
I can work (albeit at the moment from home) and do visit client’s offices from time to time without any problems. However working from home does give me so much freedom and flexibility. I can work around allergy flare ups, and I do think I would have lots of time off sick now if I had a full time job. My allergies have worsened and do effect my life in a big way at the moment.
Working from home brings freedom and flexibility
When you’re having a full on, bad allergic reaction your body goes into melt down. I always feel so ashamed to go out of the house when my face is so swollen and sore, and at home, I can get in a few hours work, then apply my ice packs and lie down for a bit. You couldn’t do that in a office situation. No matter how understanding your boss is it just wouldn’t work. I am a hermit and sometimes don’t even go out when it’s really bad.
Working from home also means I can apply all over moisturiser, have a lie-in when allergies, eczema or asthma have kept me awake and fit my work around any times when I’m ill.
You NEVER get a holiday from allergies
However I rarely go on holiday. If we do it’s not easy and often the place needs a thorough de-dust and clean on arrival. Taking my own dust mask and latex free gloves on holiday is something I’ve started doing but thankfully I don’t always need to use them! And my own bed linen. And most of my own food. And then it involves cooking all week. Not really a holiday when you cook nearly ever meal you eat anyway. But this is perhaps a small price to pay for my health.
I have been turned away from a few restaurants recently where they have not felt able to throw a jacket potato in the oven and hurl some plain salad on a plate for me. Honestly I’m not fussy. I don’t want a la carte, gourmet, everything from the menu. I just want ‘something’ safe so I can eat with my friends, family etc. Instead I am often made to feel like a fussy eater, an outcast, a freak. It’s a good job I’m not vegetarian, what would I do without my favourite plain sirloin steak with chips and a simple salad with no dressing please.
It does annoy me that almost the only safe thing on most menus is the steak, which is often also the MOST expensive choice too!
But I’m not disabled, so is this really a disability?
It seems that ‘disability’ has been a big theme for discussion on the net this month after students in America complained that there was not enough gluten free food available at University canteens for Coeliacs. Crikey, what about people with multiple allergies? They’re in a whole other kind of finding-safe-food hell.
I really struggle with this concept but it seems to keep popping up in conversation and on the internet wherever I look. So I thought I’d see what you all thought.
Are having life threatening allergies, severe asthma, coeliac disease and all these other life changing conditions a disability? Is severe eczema and psoriasis a disability? Should we claim disability allowance? Do people with allergies claim this allowance?
The recent debacle about free gluten-free goods on prescription has provoked angry debate about the pros and cons of this ‘perk’. How long will even this slight benefit last with the current state of the NHS in the UK? I fear it won’t be long. How long before the only source of gluten free goods is in shops? Hopefully increasing demand will mean prices slowly fall to more affordable levels.
Stress and depression
Having severe allergies can lead to stress and depression if someone finds they just can’t cope with all the pain, fear and complications of life. Do you get treated differently by friends, at school, by colleagues at work, by your boss? How does that make you feel?
With more and more people getting allergies and not enough specialists in the country to deal with this epidemic it can feel like you are struggling to cope on your own with no help and support.
I know my health can get me down but on the whole I try not to let it bug me. They are a fact of life but I do not have to let them rule my life.
So who is looking out for us allergics and helping to make our lives easier and as normal as they can be? Apart from us, our families and our friends?
National Allergy Strategy Group (NASG) – working to make life better for people with allergies
I have just returned from an NASG All Party Group for Allergy meeting at the House of Commons and I was saddened really, it seemed to me that we were having the same conversations as five, ten years ago. We heard from one lady who had lost her son to asthma. He had a fatal allergic reaction and until that point she been totally unaware that having asthma put him at risk or life threatening food allergies.
Are we really moving forward with allergy provision in this country? In my local constituency there is adequate provision for paediatric allergy care but long waiting lists and NO adult service at all. Adults in Bucks who have severe allergies have to fight hard to get seem in Oxford. This is not a service that is just offered, you need to be at your wits end and beg to get referred. Adults are maybe old enough to just get on with it and maybe many of them are, but not all of them. Some do need support. We should not be falling into a gap when we reach adult hood and left to just muddle along, especially if help, diagnosis, advice and support is badly needed.
There were stories of people who have very good service and support, other stories from people who have had to fight to get that help and others who have taken the private health care route, not something that is feasible for most of us. The NASG are fighting for:
- More consultants in allergy
- More trainee posts in allergy
- More specialists allergy nurses
- Improved knowledge of allergy for GPs
- Making commissioners aware of the needs of allergy patients
If we don’t all shout about what we need and get passionate about what challenges we face on a daily basis things will just carry on as they are or more likely get worse. With the numbers of adults and children with allergies rising and the corresponding number of professionals in this area falling, clearly there is a big gap forming.
And it’s not rocket science. NICE guidelines already set out exactly what GPs should look out for and how and when to refer patients with allergy symptoms but that can’t help if we continue to cut allergy services across the country, as has happened at Amersham in Bucks and may happen elsewhere if we don’t really fight to keep them.
Thanks to Mandy East and NASG for organising this event and also to Cheryl Gillan, who is the MP for one of my friends who attended this event with me, and who agreed to speak to us at some length. She really gets the situation, having an allergy herself and I left feeling very much more positive about things with Cheryl on our side.
How do we raise awareness with doctors, pharmacists, policitians, the general public, in the media? Allergies are real and they are not going away.
You may also be interested in previous post, “Allergies and Intolerances: are you discriminated against?”
What do you think? Are allergies a disabilty? Do you think you face allergy based discrimination? Should we be getting more help or should we just put up and shut up?
Further reading:
Michelle Berridale-Johnson has also just blogged about this in “Food allergies considered as disabilities”.
This American site shares some Disability secrets and explains how you can claim disability allowance. Allergies are not listed in the US system as a disability but because allergies affect other body systems this website implies someone might be able to claim.
What do you think? Are your allergies a disability? Do you feel disabled?
Hi Ruth – Really interesting – and I do sympathise with your attitude (and that of your correspondent) but…..
Two points really.
One – what exactly does one mean by disability? I think that the term has a perjorative ring about it that it really not justified by disability laws. The definition given in the Disability Act is that a person has a disability if:
‘1. they have a physical or mental impairment
2. the impairment has a substantial and long-term adverse effect on their ability to perform normal day-to-day activities’
(There is an interesting short discussion of this in a report on the FM site of a an electrosesnitivty conference in 2011 – see the first article at http://www.foodsmatter.com/es/general/articles/es_uk_conference_2011.html)
I would have said that someone with multiple severe allergies most certainly falls into that bracket – as you have said, your allergies certainly have a profound effect on your ability to perform ‘normal day to day activities’ – such as going to work or going out to a meal.
Unfortunately, for most people the term ‘disability’ conjures up wheelchairs, or white sticks or bolshy people in wheelchairs demanding ridiculous rights – but this is not how it really should be. It seems to me that being unable to do ‘normal day to day activities’ because of a physical impairment (non existent eyesight, paralysed legs or an out of control immune system ) is a perfectly good reason for being given a bit of practical help in getting through the day and, maybe as a result, being able to make a more useful contribution to society. Maybe we just need to find a better term to describe it.
Point the second………
As I know very well, you (and presumably the guy who commented) are extremely together, motivated, capable people who ‘deal’ with your allergies/’disabilities’, re-organise your lives to accommodate them and get on with it. But not everyone with allergies is like you…. Some people find it almost impossible to cope and the help, either financial or practical, that being officially designated as ‘disabled’ (or whatever less emotive term on use) would give them would really be very helpful.
An interesting parallel to the allergy situation comes with electrosensitivity which also impacts seriously on one’s ability to perform ‘normal day to day activities’. And if electrosensitives are to get disability status, which we are certainly pushing for, I think that seriously allergic people should too.
Hi Michelle, I guess I would feel a fraud but it is a very interesting concept and if these conditions were given proper recognition maybe it would help with understanding, awareness and respect.
Hi Ruth,
Thanks for raising the issue about disability and allergies. Its an interesting discussion and my adult son who has severe allergies would be the first to say that he certainly doesn’t have a disability. However as a mother of a severely allergic child back in the eighties I was unable to get child care to return to work as no-one would take responsibility for looking after my highly allergic son and his adrenaline injectors which caused my family some financial headaches. We eventually applied for disability living allowance and the doctor who assessed our case felt sure we would get it but despite an appeal we were turned down. Fortunately with a nursing background I eventually managed to get some evening work so my husband could look after our son. Finding suitable food for him was also a lot more expensive as well and I couldn’t cut corners because his life was on the line. I think there is far better knowledge about severe allergies now but I do think that some families of highly allergic children at the severe end of the allergic spectrum would benefit from DLA.
I’m pretty sure they would look at the allergy person on a good day and say, ‘Well there is nothing wrong with you’ and there isn’t, on a good day in your own home. It’s the moment you step outside that home that life becomes an endless battle of the wits. You must have had tough time Sue, but credit to you, look what a handsome and well adjusted son you now have and he is braver than me, travelling to far flung places and coping admirably.
But for some people their allergy is so severe they cannot even be in a room where someone else is eating their allergen and for small kids who touch surfaces and can easily transfer the allergen to their mouth it must be terrifying. I have had to walk out of a theatre when someone was munching on peanuts close by, luckily for me the theatre let me sit in another empty seat somewhere else. It is very tricky and I rarely eat out. and when I do it’s the simplest option, conversations with the chef, I usually pay more because the simple option is often the sirloin steak and I am on my guard the whole time. I would just much rather eat at home. I feel safe and don’t have to question, ask, worry… but I don’t think disabilities seem to cover actual quality of life or challenges like this. They historically have been more about physical disabilities. But you wouldn’t go up to someone in a wheelchair and ever say, “Really? You can’t even walk up these stairs? I bet you can walk a bit…” You wouldn’t because it would be out of order, wrong and rude. But people often ask me that. “Can you just eat a bit? Just a knob of butter? How bad is your allergy? Would it really kill you?” or you just get the blank glazed over stares at restaurants and you know you will probably be very wary of eating in tha establishment as the message is not getting across!
Trying to explain sulphites and salicylates problems to people is hard work also, after many questions,I tell them what I Should eat. Saves time
Oh yeah, I totally agree, the list of stuff you can eat is soooo much longer and more helpful, just as long as they DO know which foods would make you really ill so they don’t use them. What are the main foods that cause you problems? I think I’m OK with sulphites… fingers crossed.
Here is what I eat if I want not to have hives in my mouth blurred vision and not feel really grotty
All fresh nothing frozen or contain preservatives, some things you can eat under sulphite probs but not under salicylates or visa versa.
Chicken,beef,white potatoes not the skins Kallo rice cereal,milk cream butter rock salt rice vinegar, hot water, pomegranate, sunflower oil.
Needless to say I lost 2 stone in weight.
May I suggest sites that I found very helpful
Hold the sulphites
Salicylates forum
Allergy uk.
Love food but many things no longer love me and with hindsight they did for a long time before I sus things out, drinking wine was the trigger that set me on the quest to sorting, many hospital appointments etc,even having teeth out had to be at hospital and injections ordered in, without preservatives, I now wear medical id bracelet and carry epi pen, yes it contains sulphite so if used, go straight to hospital.
Beware a load of meds.
Happy new year everyone
Thanks so much for your comment, I keep hearing from people who have to avoid salicylates and sulphites and it sounds like a nightmare. The links suggested above are great, thanks. I plan to write about this soon so might be picking your brains. Happy New Year to you too!
My allergens have gotten more difficult to handle as I’ve gotten older. More allergens getting added to the list and more reactivity. For example, I have to have my own little oven and can’t go in/near the kitchen when the allergens are being cooked by other people in my family. I can’t sit at the table with someone eating a pizza as the wheat and dairy would trigger a reaction requiring an epi-pen.
I’ve quit working at a large well known supermarket because I was reacting to items in the store. I am now a carer very soon to be retiring. I can’t see myself going into an old peoples home either.
I dont eat out, no holidays, grand kids wont stay over in case they make me ill, cant eat anything cooked in a contaminated oven or kitchen wear. I dont trust anyone to cook for me.
The expense of buying say gluten free oats is much more than the regular product. Things cost more by having to have my own fridge, oven, freezer.
Wendy I am so so sorry, this sounds like you’ve had to really scale back what you do, I’m so so sorry. This is not fair. I wish you could get desensitised or something. How many things are you allergic to?