I've now been gluten free for 4 years. And corn free for 6. Active in the food allergy cyber world for a little longer, as I began to delve into the world of food mediated reactions. After all, it takes a lot of courage to admit that something as benign and emotionally charged as food (especially so-called 'health food') could possibly be the root of physical pain. Especially when people are telling you the real problem is located a wee bit above the digestive organs.
In this time, I've seen plenty of other patients come and go along the food avoidance forums. And they all seem to share distinct traits, in shock, indignation, anger and feelings of being overwhelmed. There appears to be a cycle of grief involved in the process of food allergy diagnosis.
To that end, I've put together the following based solely on my observations as someome with no medical training, just a patient who reads and thinks. :-)
They say that there are 7 stages of grief that one must go through whenever they experience a loss. Usually this is discussed in terms of death or divorce. The process is often applied to people who live through disasters, such as fire or severe floods.
Food allergies don't exactly compare to fire, famine, or the loss of a loved one.
But they do constitute a major life change.
When you are diagnosed with food allergies or intolerances past infancy, they become a learning process. Life as you know it has changed, and favorite comfort foods may be lost. There is a grieving process to be gone through.
Few studies have been undertaken to truly study this process. And most professionals are still struggling to separate the emotional complications of medically restricted diets from those of eating disorders. Although the fundamental fear of food is the same, one side has a rational reason and the other (theoretically) has a somewhat irrational fear.
A few publications have dared to publish the deepest, darkest fears of food allergy sufferers. Most stick to the safe surface area. Wow, what do you eat? Wow, how would you survive? And of course, the heartfelt "Hurray, my life is different but it rocks, just the same."
But support groups know the truth. Newbies join online forums and dare to ask, in the safety of anonymity, 'Is this normal?'
The stages of grief, as identified by grief counselors are as follows:
1. Shock and Denial. In the world of food allergies, this may mean not wanting to admit that the identified food really is the cause of reactions. Or that the reactions aren't "that bad". Or "Oh, well, at least I can take tomorrow off," and then take a risk. After all they "aren't as bad as some have it..."
2. Pain and Guilt. When the reality of a new style of eating starts to set in, there is a moment (or repeated moments) of panic. We think of pizza, ice cream, coffee creamer, doughnuts and other treats as necessities. How will we live without our favorite comfort foods? What will we do when we "have to" eat out?
For parents, the guilt sets in. What did we do wrong? Surely we should have been able to protect our beloved kids from the pain of exclusion. They deserve a "normal" life. At this stage, we aren't ready to reevaluate the meaning of normal. That process comes with acceptance.
3. Anger and Bargaining. We get angry at ourselves, our doctors, our bodies, even mother nature. Why should we have to suffer? Maybe we make bargains with ourselves. "If we let ourselves/our child cheat just this once, next time we'll be good." The consequences are usually enough to keep that phase from lasting very long. But if allergies are lie threatening, it can be a dangerous phase. And when it overlaps with the denial phase, or different caregivers hit different phases at the same time, it can be dangerous.
Some parents and siblings may also feel anger towards a child whose restrictions make a major impact on family life. While these feelings are normal, they should be short lived and should not cause any backlash against the child. Spouses, likewise, may feel anger towards the afflicted spouse. Again, the feelings are normal, but if they cause any retalliation against the afflicted one, outside help is needed.
4. Depression/loneliness. This phase tends to represent acceptance of the restrictions. It can be overwhelming. This is the phase where a patient, or an allergy patient's family, may withdraw. Its easier. It's safer. It's also when they need the most support.
5. The Upward Turn. At this point, there is some small success. A cake that tastes good, a compliment on some potluck dish, or the end of a successful evening out. I'll list it as separate, although it often is looped with the next two phases, and for many the first 5 appear to be relived repeatedly.
6. Reconstructing and Working Through: Depending on the food restriction,
7. Acceptance and Hope. This phase never ends. Although there will be backsliding, and occasional slips back to stages 3 and 4, on occasion as far as 2 or even back to denial (especially after feeling really well for a long period of time), once one has reached a point of acceptance, reachieving this stage seems easier and quicker each time.
Using and accepting these phases is vital to reaching a healthy balance in living with food restrictions, not just for the person affected by the restriction personally but for their close family members. There are separations and even incidents of divorce when one family member has trouble getting past feelings of denial or anger. Of course, this can increase feelings of guilt (especially for children) and depression or isolation (especially for parents dealing with nontraditional allergies and delayed reactions). A support system is vital.
Symptoms are not caused by stress. And simply eliminating a single offending food or group of foods is not always enough to alleviate all symptoms. There are remaining physical ailments (from digestive damage and malnutrion caused by years of eating the wrong foods) and there will be a variety of emotional stages. Acknowledging the grieving process is part of the road to complete healing. A wide variety of emotional feelings are normal in the course of diagnosis and learning to live with an allergy. And setbacks are normal, too.