Coping with Celiac Disease: A Therapist’s Perspective (Podcast)

Coping with Celiac Disease: A Therapist’s Perspective

When I was first diagnosed with this disease, I didn’t understand it and struggled to figure it out. Some of you are there now and are looking for help or some of you think you have it figured out but maybe just need to hear something new. I invited Jummy Olawale on my show to talk about the most common struggles associated with celiac disease ( besides the food!).

I’m so glad I decided to do this. Her insight is poignant and dynamic. She really gives inspiration and hope along with tips and suggestions for dealing with this disease. She’s doesn’t have celiac and isn’t a specialist in the disease but really can provide some help for those of us needing help. If you feel out of control or like you lost your footing, this is the perfect place to start.

Here’s a little snippet of what we discuss on the show:

1. What are some coping skills to use when someone goes through a major life change like celiac disease? When everything in your life as you know it, changes in an instant? How do you handle the sense of feeling alone and like a hypochondriac because no one else understands the complexity or the seriousness of the disease?
2. What are some coping skills for handling all these emotions? Sometimes we can have other life issues going on and this is just a huge burden on top of the lemons life throws at us. Especially when you have a bad day and just want to go home, order a pizza and lay around all night.
3. What’s the best way to explain a disease like this to husbands, family, kids and friends? How do you get them on board with helping you instead of constantly minimizing the disease and asking you to just “try a bite because it won’t kill you.”
4. How do you handle the disappointment when family and friends (or your spouse) doesn’t sympathize and isn’t as supportive as you think they should?
5. Marital problems – Handling a non-supportive spouse – what do you do? When your spouse is the only one that understands, how do you find other outlets to cope instead of stressing them all the time.
6. Changing you mindset of food being pleasurable and instead of thinking about it as fuel. People get so upset that they have to eliminate all the things they love that are poisoning them. When they get poisoned, they beat themselves up and get mad at their bodies for betraying them.

On The Air with Pretty Little Celiac is also on iTunes! You can just search “Pretty Little Celiac” and subscribe to it and all the episodes will feed right into your player!

Want to know more about Jummy Olawale?

Jummy Olawale is a dynamic speaker, life coach, Licensed Professional Counselor, Pastoral Counselor and Licensed Chemical Dependency Counselor with extensive international and multicultural life experience and education.
Biography

Jummy was born in Nigeria, Western Africa where she lived and attended elementary and secondary school. She migrated to London, England where she completed her High school and college education. She earned her Bachelor of Arts (BA.) degree in Psychology and Natural Science from Canterbury Christ Church University College, Kent. After getting married, she migrated to the U.S. where she now lives with her husband and their two children. Jummy earned her Masters of Arts (MA.) degree in Counseling Ministries from Methodist Theological School in Ohio.

Jummy utilizes narrative therapy, cognitive behavior therapy and motivational interviewing approaches. She specializes in individual, couples, and marriage therapy, multicultural counseling, parenting support, career coaching and life coaching.

 

Do you suffer from Celiac Sadness?

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If you have celiac disease or think you have celiac disease, you can’t help but go through denial at some point in this journey. For me, it was both before I was diagnosed when I had a million different health issues and then about 6 months post diagnosis when it really hit me what this meant.

In a quick internet search on denial, of course Wikipedia was the top search result but it also was the thing that hit home the most – specifically the term abnegation:

Denial, in ordinary English usage, is asserting that a statement or allegation is not true.[1] The same word, and also abnegation, is used for a psychologicaldefense mechanism postulated by Sigmund Freud, in which a person is faced with a fact that is too uncomfortable to accept and rejects it instead, insisting that it is not true despite what may be overwhelming evidence.

Turns out, it wasn’t denial after all. It was abnegation.

I’ve never heard of this term before but man does it hit the nail on the head. Let me explain…

You see there was always a suspicion in the back of my mind that I might have celiac after a coworker was diagnosed who was having the exact same symptoms as me. I didn’t want to have celiac and I didn’t believe that was the case. I said things to myself like “it’s such a rare disease” or “but I don’t get sick when I eat bread.” She repeatedly would tell me I should go and get tested but I never did.  I didn’t want to.

There I was going from doctor to doctor trying to find an answer. Trying to figure out what was wrong with me. Continuing to hear from my friends and family that I was a “hypochondriac” or “always had something wrong with me.” The answer was right in front of me for years, yet I didn’t want to believe it.

The first few months after diagnosis were a struggle. I ate the same foods every day because I knew they were safe but I was so busy opening my business that it worked out well that way for a few months. But after the shock of diagnosis ended and my business calmed down a little, the denial and abnegation reared its ugly head again.

It really hit home for me that I would never eat the foods I loved ever again.

That I could never eat a delicious piece of sourdough bread at my favorite restaurant.

That I wouldn’t be able to grab a bite to eat just anywhere anymore.

That I couldn’t enjoy foods with friends the way it used to be.

That eating fruit and cheese at weddings was my new reality.

That celiac was my new reality.

I was sad, angry, anxious, depressed and in denial.

Maybe I didn’t have this life long disease. It was a wrong diagnosis. I should find another doctor and get a second opinion. maybe I could have gluten a little bit, every once in a while. Maybe I could just do what I’ve always been doing and hope for the best in the long run.

Yup, all of these thoughts ran through my mind. I was sad for about 2 months. I’m lying – I was depressed. July and August of 2012 were just awful for me. I started blogging September 1st and after starting to find all of you online, that’s when I realized I wasn’t alone and my life wasn’t over. I could turn this into something positive and wonderful.

I want you to know it is totally ok to go through these emotions and have these feelings. A few weeks or months is ok, if you are finding it lasting longer than this, it is ok to seek professional help to get over the celiac sadness. <– This is a real thing. It never really goes away.

Celiac Sadness: The temporary feeling of sadness when you encounter any of these scenarios:

  1. You get glutened.
  2. You realize at a social event there is nothing for you to eat.
  3. You make an awesome recipe only to find out it’s disgusting and you spent $75 on ingredients.
  4. You get upset when you see someone make fun or mock gluten-free anything.
  5. You go to dinner with a friend and they constantly make comments about how you order, what you are eating or how delicious their own meal tastes.
  6. You hit your third grocery store to get all the brands of gluten-free foods you enjoy.
  7. You are on a road trip looking for a Wendy’s or Outback Steakhouse but settle for almonds and a bag of kettle chips at the gas station.
  8. You get angry when another dumb ass celebrity says they are going “gluten-free to be more healthy.”
  9. You realize how many years you spent sick because our medical doctors aren’t properly educated on celiac disease.
  10. You finally come to terms with yourself that this is your life now, you can never go back and you will be okay.

Do you ever have Celiac Sadness? Post below!!

Rebecca

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