Today marks the start of Celiac Disease Awareness Month and while I have a slew of giveaways coming up through out the month (to be posted every Wednesday) I want to first talk about:
We talk about it a lot this day and age. We’re told at defensive driving to ‘Be aware of our surroundings’, If we attend yoga we hear ‘Bring awareness to your breath’, if we read self help books we read ‘Maintain awareness about the activities that take up your time’, if we see a therapist they may tell us ‘Be aware of the triggers that make you anxious’. What all these things have in common is the development of a connection between ourselves, our thoughts, and our world. But there are levels to awareness. At the very least it makes us conscious of something (thought, feeling, action, experience, etc.), and if we give it more time we become more knowledgeable, and more mindful in our actions. Hopefully this improves our lives, as well as the lives of those around us. What does this have to do with Celiac Disease?
Well, I am a proponent of spreading Celiac Disease awareness everyday but the start of May seems like a great time to dive a little deeper into why Celiac Disease Awareness is important to begin with. Ultimately it boils down to the fact that disease creates the context of our lives. Whether the disease is mental or physical it influences the psychological, physical, social, cultural, and emotional areas of our existence right to the core. Food is often at the center of all of those areas meaning that our identity is bound in some way by what, where, and how we eat. So, with a disease like Celiac Disease it is important to not only to be aware of the ways the disease influences your life and identity but help make others understand it as well. That means considering, and sharing, some of the following areas of awareness:
Awareness of the Language: Language is the most basic level of awareness. By using the phrase Celiac Disease more consistently we help society develop an understanding of how common the disease is, as well as what someone with the disease looks like and wants. By discussing that we are following a medically required gluten free diet we shift the conversation of gluten free foods from being a trend to being a necessity. Speaking up means our voices are heard, our community empowered, and the culture hopefully shifted towards one that is more tolerant. Words hold an enormous amount of power.
Awareness of of the Disease itself: By using that language and going deeper to discuss what the disease feels like (symptoms) we ultimately make others (or ourselves) aware of the disease itself. This is important for two reasons. First, perhaps a relative or someone at risk of the disease might hear our story and realize they are experiencing symptoms. This may prompt them to get tested themselves. Second, we ourselves can become more empowered patients when we have a name for our set of symptoms and know what to look out for as we omit gluten and begin healing. Many of these symptoms may be invisible, which leads us to the importance of…
Awareness of the impact the disease can have: Discussing symptoms is one thing, but explaining what they can lead to is another. This is even more true for Celiac Disease as it is often an invisible illness. Our symptoms may be invisible but the impacts they have on our actions may not be. At the top level of awareness by discussing what our life looks like as a result of the disease we are truly giving people a clear picture. Celiac Disease is often considered by those unfamiliar to simply be a gastrointestinal disorder. Omit gluten and you are set. To omit gluten we need to change the entire way we live our lives and the actions we take, from our cupboards to how we accept (or decline) social invitations. That in and of itself is taxing. It takes time (lots of it) and it means we miss out: Nearly 50% of those with Celiac Disease have reported that they have sacrificed life experience due to their gluten free diet and/or Celiac Disease. These social changes impact not only us but our social circle, hopefully for the better.
Those of us with the disease know there is so much more to it. Physically we are at higher risk of other disorders or conditions (such as higher rates of cancers or other autoimmune conditions), and we may question whether to have children and pass on the genetic predisposition. Emotionally and psychologically the changes we need to make and maintain can result in higher rates of anxiety, social isolation, guilt, depression, and more. There are good impacts the disease can have as well. New found health can help you become aware of what life can be like symptom free (or symptom diminished). You can develop an appreciation of life in general, and come to gain more empathy for others. If we share all the personal impacts the disease can have on our quality of life perhaps people will understand, and support, our actions more often.
All of us with Celiac Disease need to take part in spreading Celiac Disease awareness, not only to make our life easier but to change how our entire culture views the disease. At a grand level, when a society as a whole is aware of a disease it often gets more publicity and becomes a topic of concern. This can lead to more effective research studies, efficient treatments (currently only gluten free foods which improve every year), more supports for that disease (tools such as support groups), and overall eases the burden of the disease. Do your own little bit of awareness spreading every day as described above and know you are part of a society of Celiacs who are all in the same boat. How will you help spread awareness?