5 Stages of Celiac by Alicia

So, I ruined my life about a week and a half ago. I was having a bad week and I decided that making it a worse week was the best way to deal with it. I was having this terrible, horrible, no good, very bad week and I saw peanut butter cookies. These aren’t just any peanut butter cookies. These are cookies that are the size of your hand and taste like unicorns, love, and the dreams of your childhood. In a moment of weakness that lasted for about an hour, I decided to eat one… Okay, so maybe it was three. Maybe I fell asleep on the coach and woke up in the middle of the night covered in cookie crumbs with CNN blaring. It wasn’t pretty. It really, really wasn’t. As pathetic as you think it sounds, it was way worse.

Anyway, I ate gluten. I did it. I don’t know why. I do know that last week was hell. I spent more time in the bathroom in four days than I think I have in the last four weeks. My stomach was killing me. I bloated up to the size of a hot air balloon. I pretty much hated everything, especially myself. It wasn’t worth it. Now, my horrible week has turned into two horrible weeks and I’m wondering if I will ever feel happiness again. Stupid gluten!!!

I could give you a list of things to do when you’ve ingested gluten to try and help your body recover. People say to do things like eliminate dairy or take probiotics. I’m sure that works for others. But, it never works for me. I don’t have any firsthand experiences that will allow me to help you with being glutened. But, besides the physical symptoms it sent me into a bit of an emotional tailspin. I really am sick. For some reason, the full force of that hit me, yet again. Maybe someday a therapy will be invented that can calm my immune system, but for the foreseeable future I’m stuck being a Celiac. Do you ever have those moments when it hits you that your life will never be the same? I will never have my mom’s frosted peanut butter cookies again. Every time I feed my son a sandwich I’m going to have to wash my hands. I’m always going to be making two dinners (one for mini-me and the husband, one for me) for…the…rest…of…my…life. I find that when you have a chronic illness there are these moments of intense grief that you have to work through. Finding a way to do that involves understanding the process of grief. In their venerable book On Grief and Grieving Elisabeth Kubler-Ross and David Kessler outline different stages we go through during the grief process. Grief isn’t just about death. We grieve any loss in our life and the loss of your health is a great one. Let’s take a brief look through the steps and see how they apply to us.

  1. Denial. When we first realize that we have Celiac’s disease we are overwhelmed. We may not be entirely sure what’s happening to us. Denial isn’t actually a bad thing. It allows us to not be overcome with feelings of sorrow or loss. It’s a way to manage pain, but it does have the downside of ignoring the important fact that you’re sick. When your doctor first tells you that you have Celiac you’re glad that they finally found something wrong with you, but that also means that something is wrong with you. You don’t want to believe it. You don’t want to upend your family’s life and your life. Nothing will ever be the same. We can’t get stuck in denial because we are sick and we do need to move forward and make changes to save our health.
  2. Anger. The second stage you may enter is being angry. Why does this have to happen to us? Why do we have to deal with this? It’s annoying. It’s inconvenient. The world is now this scary, alien place where you have to spend 75% of your time being concerned that you may ingest a tiny amount of wheat protein. It’s bull$%@*! You know what, it’s okay to be angry. This is stupid. It isn’t fair. Be mad. Feel it. It doesn’t make you a bad person. We’re all angry. It’s okay. If you just push your anger away you will never work through it. Don’t feel bad about yourself. Just don’t get stuck here either. You can’t be angry forever and even though this is a royal pain it’s not going to end your life. You can live with it and live with it well.
  3. Bargaining. The third stage is an interesting one. It’s kind of like a form of denial. We’ve all done it. “Please God just let me pass this test and I will never lie to my parents again.” Or, “universe if I can talk my way out of speeding ticket I’ll donate $25 to the food bank.” It’s the idea that we can somehow offer a higher power something in exchange for giving us what we want. “If I can eat this pasta, Lord, I will never swear again.” This is a form of denial, because it keeps us in the past. It allows us to not move into a future where we have to accept our loss and make changes.
  4. Depression. Being sad when you lose something is normal. Being sad that you will never live the life you used to is normal. Things will never be the same for you. You’re not going to be able to eat foods as easily as other people. You can’t take eating out for granted. You can’t take eating for granted anymore period. You can’t take part in birthday or wedding cake, family thanksgiving dinner, donuts and cider around Halloween, etc. Be sad. It makes sense. If you weren’t sad it would be weird.
  5. Acceptance. This is where we want to get to. Everyone works through the stages at different paces. And our Celiac journey is just that, a journey. Acceptance, integrating your diagnoses into your life, doesn’t mean that you’re never going to be sad or angry. It means that you understand in the larger picture of your life that you can do this, that life is still awesome, you aren’t missing out on anything, and that you will be okay.

Alicia is a super mom, wife, competitive athlete, and freelance writer. Find out more about her everyday adventures by liking her on Facebook.

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