Living with Anaphylaxis: Handling the Stress
by Mary Allen, AAIA Regional Coordinator, Quebec
The diagnosis of a severe food allergy brings a significant amount of anxiety, especially for the parents of an anaphylactic child. The stress level is greatest in the months following the diagnosis but it can significantly increase when there is a change in life style, such as the start of school or a move. Sometimes the stress of worrying about the allergy causes more problems than the food itself, which is usually successfully avoided.
Over the years I have gathered some information on this subject, some of it coming from professionals and some from AAIA members, who are a resourceful group of people. Perhaps you will find it helpful, particularly if you are "new" to the business of coping with a severe food allergy.
There are four principal sources of stress:
- The potential seriousness of anaphylactic reactions.
- The inconvenience and changes in lifestyle -- difficulty with shopping, having to read labels, continuously having to explain the allergy.
- Feeling isolated and feeling that relatives, friends and others do not understand.
- Letting go -- trusting the child and others to deal with the allergy.
It is not easy to be relaxed while living with the threat of food-induced anaphylaxis, since it is potentially life-threatening. Peanut allergies are particularly stressful because tiny trace amounts have caused fatal reactions and because peanut butter is so widely used by young children. Since it is so sticky, there is always the worry that it will adhere to toys, clothing, hands, face or cutlery. The start of kindergarten is usually a very stressful time for parents.
Those who learn to cope well are usually flexible, resourceful, optimistic and positive. They have legitimate concerns and fears, but they take a pragmatic approach to problem solving and try to live reasonably happy and contented lives. A positive outlook is important because the allergic child will adopt and reflect the attitude of the parents. Constant uncontrolled anxiety will affect both parents and child and can have a negative impact on family relationships.
The following tips may help to reduce anxiety:
- Get a good diagnosis from a certified allergist. Find out exactly what foods have to be avoided and know what to do in an emergency - be prepared. Maintain an ongoing relationship with the same physician, if feasible.
- Join the AAIA and try to join a support group if one exists in your region.
- Keep a supply of "safe" snacks handy, at home and when travelling.
- Concentrate on what you CAN have, not on what you cannot have!
- Do not assume that government, manufacturers or anyone else can totally look after your needs. Learn to bake at home. Learn how to make substitutions when cooking.
- Shop carefully and educate yourself about manufacturing processes. Learn to correctly read ingredient labels. Read them every time you buy a product, in case the ingredients have changed.
- Accept that the allergy will mean some limitations, but that you can have an "almost normal" lifestyle.
- Put the allergy in perspective. The actual number of food allergy deaths is small. Some reactions are fatal but prompt emergency treatment saves lives. Most deaths are preventable.
- Carry your emergency medications always and everywhere. Carry extras when far from a hospital. Wear a Medic Alert bracelet. Get clear emergency instructions from your allergist.
- Do not obsess on the "what ifs.". Decide that if you are careful and prepared things will probably work out for the best. Food allergies are definitely a challenge, but, fortunately, most children with food allergy manage very well.
- Try not to make "eating out" the focus of all family activities.
- Reassure your child that he or she can play sports and do almost everything else that other children do. Plan ahead when social occasions involve food....send snacks prepared at home, unless you and your child are very confident about what will be served.
- Inform friends, teachers and family about the allergy in a clear, concise, calm manner and give them time to absorb the information. Explain implications for cooking and serving food in detail. Repeat as often as necessary, firmly and cheerfully. Be very specific about what they can do to help you and tell them that you need their support. Be patient while you try to make them understand the seriousness of the condition.
- Make sure that asthma is stabilized and properly treated; out of control asthma can increase the severity of an anaphylactic reaction.
- Enlist the support of school nurses and other professionals. They will increase your credibility. Have a letter from your physician and make copies for schools and other care givers. Give it to relatives as well.
- Schedule meetings with care givers before the school year begins, to set in place a management plan for children with life threatening allergies. Most school boards now have policies which state that schools have a responsibility to help ensure the safety of the allergic child. If your board or school does not have a written policy, offer to work on one.
- Learn to recognize, accept and control your anxiety. Have a support system. Some anxiety is inevitable but it can be minimized. See a professional if necessary, to learn how to manage anxiety.
- Enlist the support of your spouse and make an effort to give some extra attention to non-allergic siblings, who may feel left out or unnecessarily restricted by the allergy.
- Teach your child to be extra responsible in all aspects of life, at an early age. It is important for his social and emotional development that he not be overprotected. For his or her own safety, the child needs to take responsibility for the allergy as soon as possible. Small things like learning to pick up toys and to make his/her own bed can prepare the child to be assertive and self-reliant when dealing with the food allergy.
NOTE: This is not intended as a substitute for professional advice.
Reduce your stress and join the AAIA today! Support groups and email/phone counselling are available across Canada.
from AAIA National News, Vol 1 No 1, April 1998