Am I a "Victim" of Celiac Disease?

Trigger alert: This is going to be a bit of a rant.

celiac disease victim: two hands, one with no gluten symbol on palm and one with the word victim in a red circle crossed out. pizza in background.

Are you a “victim” of celiac disease? Am I? Are you “traumatized” by this condition?

I’ve seen posts on social media and celiac blogs lately about trauma related to celiac disease and how the “system” is not set up for us and how unfair it all is…blah, blah blah.

Does this help? Are we empowered to think of ourselves as victims? Are we encouraged to take control of our lives and our health when we hear that the cards are stacked against us?

Well, I call shenanigans! It’s BS and it makes me angry. These bloggers are capitalizing on and encouraging victim mentality and they are, IMO, doing their readers a huge disservice.

Yes, we have a serious medical condition, and we need to take it seriously.

Yes, I get frustrated by the lack of menu choices.

Yes, I get angry when jerks on social media make fun of people on a gluten free diet.

Yes, it’s hard, especially at first. Those words “you have celiac disease” stir up emotions for sure. Panic sets in. OMG no pasta, no pizza, no chewy crusty rolls, no beer, croutons, birthday cake, no Kit Kat! My life is surely over!

My life in the bathroom, where I spend a good deal of time, is not fun.

But a victim?!? Trauma!?! Let’s put this in perspective

Management of Celiac Disease

You and I have a disease that is managed by diet. No daily medications. No chemotherapy. Celiac disease does not put us in a wheelchair or rob us of our ability to think or recognize our loved ones. You see what I’m doing here right? I’m playing the “others have it far worse” card and it’s true.

I don’t suffer trauma for this, I suffer inconvenience.

As for the system not being set up for us. What?!?

I walk into the grocery store and spread before me is the produce department. I can eat literally every single thing I see.

Then I turn the corner (ignoring the bakery) into the meat department. I can eat most everything there. On to the frozen foods section and (don’t look at the pizza) I can eat most of what’s there too. Dairy? Well, not for me because I also have a casein intolerance but most people with celiac disease can tolerate dairy just fine after a healing period.

Sure, I can’t have everything I want but jeeze, who can? Everyone has limits. Nobody gets everything they want. How deprived am I because I can’t have a croissant, okay very deprived let’s pick another example….how deprived am I because I can’t eat Lean Cuisine, or Ritz crackers, or Kraft Dinner? I’ll get over it and be healthier for it.

Victim Mentality

Of course, I’m just a lowly cook. What do I know? So, I went looking for expert advice on the topic of “victim mentality”.

Scott Barry Kaufman, Ph.D., is a humanistic psychologist. He says, “Those who have a perpetual victimhood mindset tend to have an “external locus of control”; they believe that one’s life is entirely under the control of forces outside one’s self, such as fate, luck or the mercy of other people.” Instead, he suggests a “personal growth mindset” which enhances “the capacity to manage effectively one's environment, and a sense of autonomy in life”. I choose option B.

Renowned psychologist Dr. Jordan Peterson says, “If I’m a victim then everyone else owes me something and I don’t have to take any responsibility” and he goes on to recommend personal responsibility as the key to a meaningful life.

Nancy Collier is a social worker and psychotherapist. Her recommendations are: “Taking ownership of your own needs and wants”, “stop blaming”, and “practice gratitude”.

So, what’s the point of all this now that I’ve settled down a bit and I’m not so angry? Why do I care if others take on the victim mindset so long as I don't?

It's because I care about you and everyone else out there dealing with this crappy disease. I think the victim peddlers are taking advantage of the place in all of us that gets to feeling down and sorry for ourselves every so often. It's manipulative and it makes us weaker, not stronger.

Certainly, celiac disease and mental health are entwined. There are days we’ll feel angry, frustrated, lonely, misunderstood. That’s normal and we do need to process those emotions. Go ahead and mourn the loss of your crusty roll, but know that you've got this. You'll find your way through.

I set up this site and the Facebook group as a place of support and information, sharing and ideas. I hope it will be a place that you can come for advice from those who have gone before so you'll gain confidence knowing you can live a nearly normal life.

Choosing Strength

We all have the choice to take a cup half full or cup half empty approach to life. And the choice we make affects our psychology and our experience in life.

Choose empowerment, choose strength.

Could things be better? Sure, but the word is getting out and there are so many more choices than ever before. By following a few simple tips, and asking the right questions, we can safely travel and eat in restaurants. Even events like weddings, conferences etc. are far more accommodating than ever before. I’m often asked to provide my diet restrictions and a special meal is provided. Far from being a victim, I sometimes feel a bit special (that’s a trap too).

I think it’s okay if we slip into feeling sorry for ourselves occasionally. When that happens to me, and it does, I find the best medicine is a good dose of gratitude. There are others who have it so much worse than me.

I am the master of my fate. I am the captain of my soul.

Take care and be safe;

Patty