One of the biggest challenges of living with Crohn’s Disease is that people have a hard time understanding what exactly it is and how it affects you. I often have a hard time trying to explain that although it appears I don’t “look sick” does not mean my immune system isn’t slowly attacking itself. Over the past 6 years of having Crohn’s Disease, I have experienced different reactions but the one that is most disheartening is the friend that either dismisses or decides to not listen to your boundaries. I can imagine it must be hard to understand that someone is capable of looking perfectly healthy but actually be disable. Invisible illnesses can include any chronic condition like Fibromyalgia, Arthritis, Diabetes, Colitis, Crohn’s and many more. The best advice I can give to those who have loved ones with an invisible illness is to respect their boundaries and remember them. It can be exhausting explaining can’t do and why it’s just not in your best interest. If you are truly interested in becoming an ally in the trenches, educating yourself is the best way. A quick Google search will at least provide you with the basics like symptoms and medication they may take. I would even suggest asking questions to show that you care enough to want to know more about the limitations they may have.
Personally, I love to educate friends on what I can and can’t do as long as they show they are interested. My issue comes into play when I am asked over and over again as if they don’t remember or they think I am being dramatic by creating these boundaries they don’t see the need for. Unfortunately, as time goes it becomes a part of who you are since it often it alters everyday living.
When I was diagnosed in 2013, I did so much research I started sending articles to my family so they would understand exactly what I was dealing with. I ran across an article written by Christine Miserandino titled, “The Spoon Theory” and it was everything I needed to say to them. The part that stuck out to me the most was when Christine explained to her friend that having Lupus meant making choices and consciously thinking about things others didn’t have to. For example, I often have the constant tug of war with myself on if I should go somewhere based off of if I am going to be tired or asked to have a drink. A healthy person wouldn’t have to have these conversations with themselves; they would either go or not go based on how they feel for that moment. My mind is constantly processing how will this affect me in two hours or tomorrow and that is typically what I base my decision off of. The Spoon Theory basically says that someone with an illness starts out with a certain amount of spoons and each task they do requires a spoon. The idea of the theory was to explain that each task, takes so much energy for that person where they might get to the middle of the day and be out of spoons all together. This was the best way I could describe my new normal to my family and it actually worked. The following Christmas, I received the most thoughtful gift from my sister it was a necklace with spoons on it. As cliché and cheesy as it sounds it was the perfect gift and gesture to let me know she understood and respected my new normal.
Allies of those fighting with invisible illnesses, I simply ask you have a little compassion and a little desire to learn about their everyday struggles. Fellow invisible illness warriors, I encourage spreading awareness to anyone who will listen.