“My two children were recently diagnosed with celiac disease quite unexpectedly. We are struggling to cope.”
- Celiac Counsellor’s Corner* is a place where Sherry Scheideman, M.A., Registered Clinical Counsellor, responds to your questions about the emotional and social issues that celiacs face. Diagnosed with celiac disease herself in 2001 in Victoria, BC, Sherry draws upon personal experiences and a Master’s Degree in Counseling to support you in transcending this ‘life transition’ and turning it into an opportunity to live your best life – ever.
I received the following heart-wrenching letter from a mom:
My two children were recently diagnosed with celiac disease quite unexpectedly. We are struggling to cope. It seems I’m having the most difficult time because I know the detrimental effects of this disease and how socially isolating it can be. They are kids and just see it as a diet for now (not enjoying it, but dealing with it as best as they can). My husband and I are completely GF with them for support and do not even cheat when they aren’t with us.
The reason why I am reaching out is because this has thrown me into a debilitating depression. I’m crippled with anxiety about daily events and their future struggles. I just can’t shake it and I am very worried that I never will. All I can manage to do is make sure they are eating GF meals but otherwise, I’m a walking zombie.
I know I have to get it together for them…believe me, I fake it as much as possible. Others around me think I’m going crazy but they don’t seem to realize how real this is. This is not a passing medical episode…. it’s chronic and life changing. I can’t bear for my kids to have this life with these challenges. I know many people have it worse but this is their story and their struggle.
We went from being an active, social and happy family to this suddenly. It feels like a rug was pulled out from under us. I can’t seem to catch my footing. What can I do to move on? Is this normal? My husband is dealing with it so much better than me and I fear this will be a detriment to our marriage because I’m being so weak.
Any advice would be much appreciated, if possible.
Thanks for reaching out about this – you are right when you say the rug has been pulled out from under you. It is no wonder that you feel like you can’t get your footing. You’re not weak or crazy – this is real, and it’s very difficult.
You ask what you can do to move on. The most effective way I know is a technique called “The Work of Byron Katie”. I will walk you through it below.
Doing The Work
First, notice the painful thoughts you are believing and write them down:
- This disease has detrimental effects.
- This disease is socially isolating.
- This is causing depression and anxiety.
- Daily events are now scary.
- The future will be full of struggles.
- I can’t shake the anxiety and depression this causes.
- This makes me a walking zombie.
- Others think I am crazy.
- Others do not understand.
- I have to fake it.
- This is chronic and life wrecking.
- I can’t bear for my kids to have this kind of life.
- This wrecks our family’s way of life.
- This destroys our stability.
- I can’t move on.
- I am weak.
Question each thought using the four questions and the turnarounds of The Work of Byron Katie. Here is an example from your list:
THOUGHT: I can’t bear for my kids to have this life.
- Is it true that you can’t bear it?
- Can you absolutely know it’s true that you can’t bear it?
No. I can bear it. It’s hard, but I can bear it.
- How do you react when you believe the thought “I can’t bear it”?
I get anxious, depressed, debilitated, crippled, worried, I become a walking zombie, I fake being together but I’m sure people think I am going crazy, I feel like a rug was pulled out from under us, I can’t move on, I can’t catch my footing, I see a future of suffering for my kids, I see a future of my marriage ending because I am being so weak, I see images of the past when everything was great and I am filled with grief. In my mind, I see my kids as victims whose lives have been wrecked, I see myself as powerless and a failure.
- Who would you be without the thought “I can’t bear it”? Imagine you are in a parallel universe where everything is the same — your kids are diagnosed with celiac disease – but in this parallel universe, the thought “I can’t bear it” does not exist. What would it be like?
I would feel stronger… I wouldn’t doubt my abilities… I wouldn’t feel so powerless… I would feel lighter, not consumed with worry… I would see my kids as they are instead of as walking tragedies… I would embrace our life… I would feel confident… I would use my skills and resources to respond to this… I would take it in stride.
Notice the power of your own thinking… when you believe “I can’t bear it”, the world becomes a terrible place. When you don’t believe it, the world is fine. The world itself did not change – only your thinking changed.
Turn the thought around to its opposite.
“I CAN bear for my kids to have this life.”
Find three ways that the opposite is true.
- I can learn how to be gluten-free and my children can, too, and we will be alright.
- I can see lots of joy in our lives even with these restrictions.
- I am strong and resourceful, and celiac disease won’t prevent me from celebrating this gorgeous life I have with my family.
Go through this process with every painful belief in your list.
You can’t change the fact that celiac disease is in your life, but you can notice when your thinking is causing you pain, and you can question your thinking. That’s where your power is. That’s how you take responsibility for your own happiness.
It’s possible to do The Work on your own, but if you’re too overwhelmed, it helps to do it with a facilitator. I am available to help you question your thinking, over Skype or in my Victoria office.
- Contact Sherry
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“Life happens! Why not love it?”
“Being diagnosed with celiac disease and going gluten-free has challenged me to develop inner resources that I never knew I had, and I’m grateful for that. As a counsellor, I love to help other celiacs find their own gifts within the challenges of the disease, and to facilitate healing. Why not let your celiac disease motivate you to be your best self?”
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- *Information and perspectives provided in Celiac Counsellor’s Corner are intended to provide general information, without independent verification on the part of The Celiac Scene for the accuracy of the information provided to it. The information is specifically not intended to be a substitute for medical diagnosis or treatment by your physician or other health care professional. You should always consult your own physician or other health care professionals about any medical questions, diagnosis, or treatment, especially before trying any diet. The Celiac Counsellor’s Corner does not accept any liability for any injury, loss or damage incurred by use of or reliance on any content contained herein.