Murky waters. That is the term I would use to describe the misunderstanding around what could be called “invisable illness”. On a day to day basis, myself, and others with these types of illnesses experience debilitating symptoms that no one is able to physically see. On the outside, we appear perfectly healthy, but if you were to flip us inside out, you may begin to see things differently. We have good days, we have bad days, and we have everything in between. Currently, even on my best days, I am not symptom free, they are still present, just at a lesser intensity. And only a few people see me on my bad days, when everything in my body hurts and it takes all my strength to get through the day. I don’t broadcast my bad days, even though they are much more common. Most days, I try to push through life activities, because if I waited for a good day, I would get nothing done. As time goes on, with my medication I am hoping for some improvement. But as of right now, if I am faking anything, I am faking being well. At this moment, I would give anything to be a normal 19 year old college student stressing about my next exam, to still have the privelidge of being a college athlete, to feel like I have a social life, and so many other things that I am not able to enjoy. There is nothing fun about this situation, but I try my best to make the most out of what I was dealt. As luxurious as it may sound to spend days in bed when you are exhausted from the hustle and bustle of life, I can promise you it’s anything but luxurious. I can completely understand where the confusion comes in, because in a way, I “hide” being sick from all but a handful of people. But, I am not going to bring everyone down with me just so people understand. So please believe me when I say that being sick is not an excuse people use.
Unfortunately, the water is still murky in the relationships of those who do believe you. This has been a major struggle for me. It’s crazy to me that someone you know so well can suddenly feel like a stranger. However, it makes sense that this happens because the realities in both of your lives are much different. Both realities come with their own sets of struggle equally as difficult. However, neither side can truly understand the other without being placed in the situation. At this point I don’t know how it feels to watch someone you love struggle and the feeling of powerlessness that comes with that. The best I can do is imagine. Similarly, others will never know how I feel in the struggles I face. This doesn’t mean that they don’t understand how hard it is. I know, some people in my life would take on the burden of this illness for me if they had that power. It’s important to realize, that although these waters can feel murky, each side is trying their hardest to understand.
Unfortunately, the people you love the most, are the ones who see you at your very worst. I can’t speak for others on this one but, I know my bad days come with a mesh of emotions. More often than not, the anger, resent, and frustration of my situation gets taken out on them. I feel bad for putting them through this. As hard as I try to stay positive, there are some days when there is just not enough energy.
At the end of the day, neither side has it easier.The roles are equally as challenging. It’s hard to experience the sense of “murky waters” of people who you were always able to relate to with such ease. However, you soon realize that although the waters are murky, there is still a way to navigate through.