May 18, 2017

Throwback Thursday: The Dark Side of Celiac Disease

Disclaimer: I am not a licensed medical doctor or counselor. All of my posts are from my own personal experiences in the areas of my own health and wellness. My posts are meant to inspire you in your health journey, but do not qualify for professional medical advice or diagnosis. Please consult a licensed medical professional or counselor. I cannot be personally held responsible for any advice you take from my blog postings and implement into your life without consulting a medical professional first.

Even though most days I put on a brave face there are hard days when I just want to be cold and bitter about my Celiac Disease Diagnosis. Managing a disease that nobody sees on the outside is NOT easy! There are days, moments, and situations when I want to punch walls and/or ball up and cry, but I choose not to do this.

It is easy to play the victim when dealing with a disease that life threw your way. It is easy to let it control your life and define you. The dark cloud or bubble an autoimmune disease, and any disease, puts you in never goes away because there is no cure.

So if you have someone in your life that is battling an inner fight be easy on them in their dark moments. It really can be hard and I was obliviously struggling with it this time last year.

Written Thursday, May 19, 2016

Wow…..Celiac Awareness Month is halfway over and I have not posted at all!

One reason is because life was very eventful the first week of May, but another is because I have been uninspired to write and to raise awareness for some reason.

The truth is that it gets hard to constantly fight this fight. Sometimes I just get really tired of thinking about the challenges we Celiac’s face in society. How we have to defend our DISEASE and still do not get the respect we deserve. I get tired of constantly having to think and plan every meal/snack of my life. To constantly advocate for myself at events because people do not think of dietary restrictions. To constantly say no and feel the stares and the shade people send my way. To be in a room of people and feel all alone because I can’t take part in the celebration. A lot of people will read that and say, “but you can take part in the celebration without eating the food.” You are right I can take part in the celebration, but do you realize how left out I feel? How I feel isolated and like an outcast. How I feel angry, sad, and disappointed that nobody considered me and my dietary needs? A lot of people will think I am snobby or high maintenance for thinking and feeling this way. They will have remarks saying “the world cannot revolve around you”, “it is not possible to please everyone”, and my favorite is “they didn’t know.”

The truth is you never fully understand until you are on the other side of the table. You never really get it until you live this life. Part of raising awareness is trying to see the other side.

I have always prided myself in looking at the positive sides of this disease. Not only did my diagnosis make me feel better but it changed my life COMPLETELY. Even outside of the health arena! It has helped me meet people and accomplish things I never would have otherwise. However, there is the dark and depressing side of having this disease, and I feel really any autoimmune disease.

This dark side of the disease leads you to being an emotional hot mess half the time. When you can not eat the food provided to you. When you debate about eating the gluten containing food just to feel normal again for five minutes. Then six minutes later regretting it for weeks! When you are always remembered as that one annoying customer or person. When people misjudge you as a person because you have a demanding dining request to help control a disease. How incredibly alone you feel at social gatherings. The emotional roller coaster goes on…and on…..and on. The kicker is that sometimes the emotional roller coaster does not hit you as hard as others. One day you will be fine with the lack of inclusion, and the next day you will be blazing mad about it.

So what can you as a Non-Celiac person do? You can OPEN your mind and eyes to this issue. You can try and see it from our side. You may not fully understand it, but you can at least empathize with it. You can advocate for the inclusion for not just Celiacs but ALL who suffer from Food Allergies at events that involve food. You can make it a point to ask about restrictions instead of waiting to see if someone will tell you about their dietary restriction. BE PROACTIVE!!! Yes it is our responsibility to advocate for our needs, but those that do not suffer from Celiac or a food allergy should do their part in making us feel safe to voice our restrictions. For example, asking about restrictions instead of waiting for the individual to tell you about theirs. When people do not ask about restrictions up front, I automatically do not trust that they will advocate for me fully and I bring food just in case I do not feel safe, or worse they do not provide anything at all. I do not say that to be cynical but it is just how I feel.

This post is not about getting pitty from people or to offend anybody. It is about showing you the not so positive side of life with Celiac Disease. The depression that can sometimes come when battling an autoimmune disease is real! I was depressed most of high school, partly because of my undiagnosed Celiac disease. Now that I have a diagnosis I am certainly not going to let it depress me now, even though some days it is really easy to let it. Instead I try to let my disease fuel my fire and passion for raising awareness. However, I felt it was important and necessary to say that I am human and sometimes I get really tired and fed up with constantly having to advocate for myself. Especially since lately this has been a challenge for me.

Until next time,