Friday, February 11, 2011

Grieving the Diagnosis

Everyone grieves at one time or another in their life time. Whether it be over the loss of a loved one, an illness, relationship challenges, or the loss of a prized possession. Most often people experience the same emotions. One can sympathize with another because most likely they've experienced the same or very similar loss.

There are five steps in the grieving process according to Dr. Elizabeth Kubler Ross.

1. Denial and Isolation

2. Anger


4. Depression

5. Acceptance

The steps may not go in any specific order, but the ultimate resolution is acceptance of the loss.

When a loved one is diagnosed with a special dietary need, immediate family members grieve. But unlike the death of a loved one, that others have experienced, families with children of special dietary needs are often left to grieve by themselves. Others can not sympathize or relate (unless they too have the specific dietary need). Often times the lack of ability by others to sympathize or even empathize results in misunderstanding, lack of support, and often times frustration.

This can be extremely difficult for the family with a child who has special dietary needs. Often times they lose friends. They are viewed as "different" or "paranoid" or sometimes even "crazy." This particular kind of grief has been called disenfranchised grief, since there typically aren't any culturally-accepted practices for grieving this kind of loss. (When was the last time you went to a wake for wheat products for someone diagnosed with Celiac disease? Did you get a Hallmark card expressing condolences for your child's lactose intolerance? Didn't think so.)

So, knowing that other people might not be able to relate to, or even be willing to relate to, your grief over your child's diagnosis, the question becomes, how do you move through the grief cycle and arrive towards acceptance?

A suggested first step would be to identify where you are in the process. Allowing yourself to be in touch with whatever you might be feeling (and it might be many different feelings), is vital to the process of healing and arriving at some kind of peace about the diagnosis. It is also not easy, since it requires honest self-reflection and the feelings might not be exactly pleasant to experience. This sort of honest self-assessment is needed in order to begin moving through the stages, since failing to do this could result in being "stuck" in one of the stages and the grief will continue to be an overwhelming presence in your life for a long time.

Kubler-Ross believed that going through the stages in order (as they are listed above) was important, since the patients she studied seemed to do best when they followed that order. Other researchers have noted that not only are there perhaps fewer or different stages altogether, but that movement through each stage in a particular order is not necessary or even optimal. Furthermore, some research has suggested that is is quite normal to revisit one or more of the stages once or even several times each before arriving at some sort of acceptance, or to completely skip over some stages entirely. The key is doing whatever you need to do to move forward (slowly and unsteadily, most often), until the loss is manageable. (A great article in Time Magazine dated January 29, 2011 provides a good overview of some of the challenges to the Kubler-Ross model).

Despite the criticisms, however, the Kubler-Ross stages are useful for our discussion here, so a brief overview of each stage and how it might be experienced is provided below, along with ideas for how to move through each stage successfully.

1. Denial- The most well-known and obvious stage, and one that has some real potential for problems now and in the future if it is not dealt with somehow. With food allergies, we have found that this happens most when there hasn't been an "incident" with the allergen in a while, and the parents start to question how severe the reaction really was, or if it was real at all, or continued attempts to think that "maybe my child will grow out of it." The dangers here are obvious, so the key to dealing with this stage is to confront the doubt and uncertainty. This tip from the Mayo Clinic website sums it up well:

  • Honestly ask yourself what you fear.
  • Think about the potential negative consequences of not taking action.
  • Allow yourself to express your fears and emotions.
  • Try to identify irrational beliefs about your situation.
  • Journal about your experience.
  • Open up to a trusted confidante.
  • Find a support group.

2. Anger- This one again is fairly self-explanatory, but also has a lot of potential for causing problems in your life if left unaddressed. This one can come quickly after getting through the denial, and with dietary needs, this can take the form of anger against God, or nature, (the "why me?" response), anger against people who are careless around your child with food, or unwilling to take it seriously, or the declining rate of invitations to birthday parties, holiday celebrations, family gatherings, etc. (lots of dairy and wheat products involved in those, aren't there?) There are many, many approaches to dealing with anger in general, but the main idea here is to acknowledge that it is okay to feel angry about the diagnosis, about the situations that arise, and people's attitude, but to not get stuck in that anger and take it out on others, etc. This one can be brief and healthy, if needed.

3. Bargaining- This one may or may not apply as often as the others, and is relatively short-lived, since it almost always leads the person to stage 4 (depression). The idea here is that you try to strike a deal with God or whomever or whatever force for good in the universe that you believe is "out there", offering to do good deeds, or quit smoking, or appreciate the small things, etc. in exchange for a remission of your child's special dietary issues. The quickest way through this stage is to realize that, well, it probably won't work, and so, you give up the pleading and continue on to...

4. Depression- This can take two main forms. One, depression about the specific things that you or your child lost upon arrival of the special dietary need. So, for someone with a severe peanut allergy, it's good-bye PB&Js, forever. The second form takes hold as the person with the special dietary need grows up and the implications and consequences of that need play out day to day, over the lifespan of the person. This stage is processed in a similar way to the anger stage, in that the key is to be aware of and in touch with the feelings of sadness and deal with them as they surface. This is not to be confused with clinical depression, which is the result of neurochemical interactions in the brain. However, if left to linger long enough, unresolved feelings of depression about your loss can lead to a depressive episode, so if this happens, it may be necessary to seek out professional help though a doctor of mental health worker.

5. Acceptance- peace, resolution, recovery, reconciliation- it has many different names, and when "it" finally arrives, the feelings associated with it are just as varied. As noted above, some form of acceptance might be experienced early on in the course of the special dietary need, but something could happen to you or your child along the way (loss of relationships, close calls with allergens, feeling different or isolated over time, the accumulation of related health issues, the high price of allergy-friendly living, etc.) that could trigger the onset or recurrence of one of the first four stages. The key again is openness about the feelings, communicating and a desire to move forward towards acceptance. A sense of humor doesn't hurt either ;)

Questions to consider and discuss:

So, what has your experience been with these stages? Have you been through any or all of them? Have you felt stuck on any? What have you done to help move yourself through them?

As mentioned earlier, this is a sort of disenfranchised grief, and you might have to go it alone, with little support from family, friends, schools, etc. So what has your experience been in those kinds of situations? How have you increased awareness or sensitivity towards your child's needs?

Remember, some folks have found that not everyone goes through (or even needs to go through) all five of the "classic" stages of grief, and there is no set pattern for moving through them that is perfect for everyone, so your experience with the grief process may be entirely different than anyone else's...and that is OK!


  1. This is a great post!

    I think I have experienced all of the steps except for perhaps bargaining. And I can definitely say that I have visited them several times over--I kind of go in waves. Part of that is because Seth does not have an allergy--so we keep hoping that THIS time he'll be able to eat. And since we have tried OH so many times.. I think I have gone through almost all of those steps each time we try feeding him.

    I don't think I've ever gotten stuck at a stage. I usually move through the anger and depression fairly quickly--within a day or two for each. I don't tend to mope about it, but I do kind of have to go through the process every time feeding Seth fails.

    I don't have any experience dealing with dietary problems on a social level yet, since Seth has never made it out of the hospital. Most of my social problems have just stemmed from him BEING in the hospital for so dang long! But if we are not able to get him fixed up, it will be interesting to see how things change.

    Love the post! It's nice to understand the process, and have it out in my concious mind rather than my subconcious. Reading about it made me realize, "oh yeah, I totally do this!"

  2. It’s hard to say what stage I’m in right now. I’d like to think it’s acceptance but then something will happen and it can change. I feel isolation and anger a lot because the lack of understanding by other people and when someone makes fun of my heart ache I want to crawl into my cave. I just feel so grateful to have a supportive husband.

    I would like to think I have helped educate people about food allergies but some people will never understand. The best thing I can do is to not take it personal. I try to consider how ignorant I would still be if it had not affected my life.

  3. I revisit the anger, but for me it is more sadness, often. Like right now I'm choosing an elementary school for my allergic daughter. It's come down to a school that is pretty safe and nut aware with a lesser education and a school that is not as safe and the staff not as aware but they have what I feel is a better educational system. I think it's sad that I have to choose and still fight for her safety in school. Why should it be so hard? It's just sad to me.

  4. Thanks so much for this post, Renae, and for everything you do in this area for people like me. I have never had anyone in my family or even close friendships who have had any struggles with changes in their diet for whatever reason, and so when the shock came about my daughter's galactosemia, I had no experience to fall back on and no one in either of our families who really understood. And still no one I know really understands what we are going through, not even the few random people I have met through cyberspace who have children with galactosemia, because it is so different for each individual, but things like this help to know there are other people out there to go to for some support and ideas and then tailor them to our needs. And this experience has definitely helped me understand others with any difficult dietary situation.

    My grieving as others have said was huge in the beginning, but I go through it all the time with new problems, all the new social difficulties, the developmental issues, and just the constant unknown. Some of the hardest things are that there is so little known about the disorder, and so much disagreement, and that no one really understands what it is even after I explain it over and over.

    There is so much I could say, but I definitely think we all must go through this process, and allow ourselves to go through it again and again whenever necessary. And of course to support each other in it as well.