Food Allergy Community: Grief and Loss

I am forever at a loss when it comes to processing and posting about food allergy and asthma deaths.  I get physically sick to my stomach, I grieve for the family, my own fears, I want to learn more and most all, I strive to make sure none of those deaths are in vain and that we learn from them and support family members.  This whirl of energy is confusing and after speaking to Aleasa Word, founder of Allergy Words, my confusion lessoned and now I understand better how to process.  Graciously, Aleasa has written an insightful article to be shared about coping with food allergy deaths in our community and it is posted below.  THANK YOU Aleasa for your wisdom, time and expertise!

Note: I’m updating my website look, so things may move around and change over the next few days!  I had planned on not posting, but this article is too important to not share as we let go of 2014 and welcome in 2015!

How Should We Handle Grief and Loss in The Food Allergy Community?

As we round out what has happened in 2014, I sit in amazement with all of the troubling events.  Rioting and looting, claims of police brutality, financial concerns and more plague all Americans and it can be tough for anyone to see the silver lining.  Sadly, in addition to these things, this year has been exceptionally hard on the food allergic community. We’ve lost several people especially in the last two months ranging from children to adults.  The community has been stunned over and over again asking ourselves “what more can we do to stop the senseless deaths” of our beloved family members. 

With food allergies on the rise, more and more people like myself find themselves serving in roles as advocates, educators, support group leaders or work at national organizations trying to eradicate food allergies and control the incidence of anaphylaxis. When losses occur, news stories are reported, Facebook posts increase, blogs are written and even Twitter news spreads like wildfire.  As things appear on social media and television, my mind continuously leans toward the question “what do the families think about all of this random information about their loved ones who up until now just lived day to day like us trying to manage the condition?”

Grief is an unpredictable thing. We experience it due to death; however, we also experience it when we lose things like jobs, relationships or become ill.  As a community, we grieve along with the families who have lost loved ones; but, it’s important for us to be respectful and remember it is “their” loss.  We want to help. We want to scream to this hills that we also have fears as we hope we never have to experience that kind of pain.   Anxiety runs high and our desire to do more can be overwhelming but doesn’t have to be.

Here are some things to remember that can help us all deal with things a little better:

1. National organizations feel it just like we do and they work behind the scenes to contact families as quietly and respectfully as possible to allow them to grieve.
2. Families are paying attention and they know more often than not that we are rallying behind them but sometimes just aren’t ready to speak publicly yet.
3. This is THEIR story and THEY own it so it’s best to speak from a place of compassion.
4. Flowers for Anaphylaxis™ works behind the scenes to send out grief packets that include things like a specialty card with logos from support groups all over the US and Mexico, condolence notes from leaders, bracelets, and/or flowers if information is received before the service takes place. National organizations have helped in many instances to notify FFA to make sure families are included.
5. Love Remembers Day™ was developed as a legacy event for ALL of the community to show families how much we care about them.

What can you do?

1. Make sure you have the facts.  A lot of misinformation has been spread unknowingly and this is extremely hurtful to families and kind of embarrassing to us.  However, we also don’t want to pressure them for information. 
2. Wait for families to take the lead on how much publicity or contact they want to have. Remember there are 15 million living with this and families get a lot of contact from people including news organizations which can be overwhelming.
3. Know that grief is different for each person. What I would do may not be what you would do. Here are what we call the 5 Ways We Grieve  and let’s not forget there are 5 Stages of Loss and Grief which are denial, anger, bargaining, depression and acceptance.
4. Check in with organizations who do this kind of work regularly as there are proper protocols to manage grief stricken families and try to centralize what we are doing if possible.
5. Be conscious of the anxiety of you and others in our community may feel and realize when some lash out or post, recognizing where you are in the moment can help you cope better with what is being said to avoid additional conflict.

As always, I encourage anyone who wants to talk or who feels stressed about this to feel free to reach out to me if you’d like.  We are a community like no other and we can continue to make a difference despite what we’ve experienced this year as long as we remember to move forward together. There are also other practitioners available in your local area should you need to speak with a behavioral health professional. 

Aleasa M. Word, CLC, CEIC is an internationally certified emotional intelligence coach. She is the founder of Flowers for Anaphylaxis Grief Outreach, Love Remembers Day and the Food Allergic Multicultural Society of Diversity as well as the developer of the From Diagnosis to Living Again coaching program. She has three children who all live with food allergic conditions.