Christmas is heading this way and although this is great news for most people, for coeliacs or people with serious allergies, Christmas and the entertaining that is so essential a part of the festivities, is also a time of anxiety – and often, fear.
No one who has not lived with a life threatening condition such as serious allergy can really understand the 24/7 state of anxiety that it induces. An anxiety that has to be managed or it can take over the whole family’s life. Several years ago we printed an article from the FAAN newsletter (the main US food allergy support group) about Stephen, an eight-year-old with severe milk allergy who became so anxious about the possibility of a reaction that he became obsessively cautious, virtually bringing his life to a halt. With help from a mental health therapist and his allergist, Stephen learnt to manage his anxiety, using the three ‘E’s as prescribed by the allergist – Educate, Equip and Enjoy – learn everything you can about your allergy, always carry an in-date Epipen to cope with emergency reactions – and then get on with your life. However, I absolutely realise that this is easy to say, but much harder to achieve.
But, assuming that you and your family manage to come to terms with the daily stress and risks of a reaction, times like Christmas pose a particular threat, especially if children are involved.
• General excitement. In the general excitement and hurly burly, it is all too easy to let one’s guard down. Parents may also be really reluctant to spoil their child’s fun so may take risks which they might not take on a normal day.
• Grandparents and other family/friends. No matter how much you coach grandparents and family in the requirements of your child’s allergy, all too often they will not really understand and either forget or believe that it will be OK to have a forbidden food, just this once…. This is a particular problem for parents of hyperactive children who are sensitive to additives/colours/sweeteners, as well meaning family and friends cannot get it into their heads that it really will not ‘be OK for them to have a treat because it is Christmas’.
• Gifts. Can you monitor the contents of every gift your child receives?
• Entertaining and being entertained. If you are running the party then you have control of what is being offered but what if you are going elsewhere? This post was actually sparked by reading another excellent post on a coeliac site, The Savvy Coeliac, which talks about how scared coeliacs can be by the prospect of being entertained and unintentionally ‘gluten-ed’ by their hosts – so scared in some cases that they simply do not ever go out. Others prefer not to say anything and just suffer the consequences of eating gluten when they shouldn’t – not an option open to those with life threatening allergies. The Savvy Coeliac goes on to given some very useful advice for prospective hosts of coeliac guests on contamination and ingredients issues which she refers specifically to gluten but is equally relevant for any other allergen. Well, worth a read.
• Confidence. It seems to me, however, that one of the most important assets that an allergic or seriously coeliac person can have is self confidence, built on the belief that it is perfectly OK, if a pain, to suffer from an allergy and that your allergy (and therefore you) are entitled to just as much respect and consideration as a diabetic’s diabetes or a pianist’s need to protect his or her hands.
This confidence will enable you to tell people about your allergy or illness and to make it a condition of friendship that your condition is taken seriously, even if the friend wishes to have no further active involvement in it. It will allow you to behave in a way which is right/safe/appropriate for you, whatever your companions may do or say; it will enable you to talk about your allergy or condition when asked without hectoring and it will give you the comfortableness-with-self to be the odd man or woman out, if that is the only safe thing to be, and to be your own companion if no other suitable companion is available at that moment.
While Stephen’s story illustrated all too well the psychological perils of allergy, another young man whose story we reported on the site offers a really positive blueprint. Callum was allergic to milk, eggs, peanuts, nuts, sesame and penicillin as a small child, and suffered from asthma, eczema and rhinitis. As he got older, his allergies diminished in severity but did not disappear. His mother wrote us a letter in response to one of the many sad tales of allergy ignored that we reported, and then ‘interviewed’ Callum about his allergy. You can read the whole interview here, but two comments in particular struck me as a really great way to turn that negative into a positive – and to get out there and set the agenda, rather than allowing it to be set for you – :
Mum: You’ve recently grown out of your allergy to all the other nuts apart from peanuts. How do you feel about that?
Callum : I feel that it’s good in some ways but bad in others. I felt it was like a world record that I was allergic to all nuts – and now I’ve lost it.
Mum: So your allergies make you feel special in some ways?
Callum: Yes – because it’s very unusual to find someone else with so many. When I go into a new class I tell every one I’ve got allergies just in case they eat peanut butter and sit next to me or something like that. Two other children pretended they had food allergies – I didn’t like that because I felt they were kind of making fun of it.