Life With Chronic Illness – The Unfiltered Version
I was about to post another witty or motivational quote to Instagram, when I realized that didn’t reflect my reality today. To be honest, it hasn’t reflected my real life for the last several days. Though I have only had a soft launch for my blog (partially due to the things I am about to tell you), one of my goals going forward with my blog has been to be as real as possible. Then, I realized I was hiding parts of me that are pretty damn important… for fear of what? Being judged, being misunderstood, perhaps? Then I realized, it didn’t really matter. What matters is putting my reality out there because there is somebody that needs to read it to know they aren’t alone. Because someone out there is feeling this way, too.
I have an auto immune condition called interstitial cystitis, as well as endometriosis and chronic fatigue syndrome. These are all chronic health conditions. Each of these causes a variety of symptoms. But to give you the Reader’s Digest version, they cause me to be in pain most of the time. Some days the pain can be managed better than others. Some days, it is a feat just to get out of bed and do something as simple as take a shower. Sometimes the brain fog is so intense, I can’t even do some of the simple things I love so much like write or even read a book. Words don’t come to me or I will read the same sentence over and over again, my mind simply unable to interpret the letters on the page. Many times I have to decline doing things I want to do so badly all because my brain and my body can’t get on the same page. Some friendships fall away because they mistake my inability to do things with them as a desire not to, and that is simply not the case.
Well-meaning people make suggestions about my diet or various treatments they have read about. I listen because I know their intentions are good. What they don’t realize is I have read hundreds upon hundreds of those articles and tried literally every single thing within my power. I have found some things that help, but more things that didn’t. We live in a society where people think every single problem can be fixed. I wish that were possible, but sometimes we have to accept that we will be left with more questions than answers, and that is OK.
Here is my reality: I am sick and it is quite possible there will be no substantial cure found within my lifetime for my health conditions. But my illnesses do not define me. They are not who I am. I will have good days and I will have bad days, but those don’t define me either.
What does define me is my ability to always find something to be grateful for and happy about on my toughest day. Even when I am screaming at the heavens and wondering “why me?” when I have been laying in bed for days on end. I will always have at least one thing to be thankful for. And it might be that one thing that helps carry me through when I feel like I cannot carry on. What defines me is that on the days that I do feel well, I get out there and I enjoy them. I feel the sunshine on my face and I throw my head back in laughter. I savor those moments because they are the moments that carry me through the darkness that threatens to engulf my soul when the pain sets in.
As I type these words, tears are streaming down my face, but they are not sad tears. They are tears of relief and acceptance. I realized I have let fear hold me back from sharing this part of myself with those around me. I feared those around me wouldn’t accept me, because God knows I have dealt with that. But more so, I was not accepting myself and every part that makes up the big, beautiful mess that I am. I was letting fear help define who I am. There is no more room here for fear. I want those around me to truly know me, dents and all. Though physically I may be weak, I have a warrior spirit and a heart that feels intensely and loves completely.
If you are reading this and you struggle with a chronic health issues or anything else that makes you feel less than, I see you. And you are fucking beautiful.
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