I'm Just Plain Tired
Today was a tough day. I’m exhausted and overwhelmed mentally. Some days it just takes its toll on you. I haven’t been sleeping well the past few days, so I’m physically tired. I’m tired of being quarantined due to a global pandemic. I’m tired of not knowing when I can return to some semblance of my normal life. I’m tired of having to explain to people why it is important for them to wear a mask to protect people like me. I’m tired of doctor appointments and lab draws. I’m tired of having to stick myself with needles every week for infusions, even though I know how much it helps. I’m tired of losing every Monday evening to the sleepiness that comes with the infusion medication and the Benadryl I have to take with it. I’m tired of fighting the insurance coverage battle and having to convince a company that the value of my life is more than the cost of a medication. I’m tired of exorbitant co-pays and sitting on the phone for hours to get billing errors fixed on a regular basis. I’m too tired to advocate today. I’m tired of the majority of people not caring enough about my disease to help me advocate when I am exhausted and not caring enough to even learn what my disease is. I’m tired of trying to explain to them WHY they should care enough to advocate for people like me. I’m tired of people questioning if I’m really that tired when I say I’m exhausted, because I’m young and have no kids yet. I’m tired of having to explain that chronic illness tired is in fact very freaking tired when it hits. I’m tired of having to constantly fight WHILE I’M SO TIRED. My soul is exhausted.
Today I started the day with an urgent work need before I could get in a single sip of coffee, and the day went downhill from there. Today when I finished working, I drew a hot bath and just cried. It was all I had the mental energy left to do. Even though I am surrounded by people that care about me, there are some aspects of this life that are so lonely. There is loneliness in the fact that most people around you don’t spend their days like this. There is loneliness in the fact that very few people around you seem to care about how much money you have to spend EVERY. SINGLE. YEAR. in order to stay healthy. There is loneliness in the fact that you can’t take a summer vacation like your friends do, because you had to use all of your PTO on sick days.
It’s infuriating and lonely that people lose interest in helping when they find out that your disease is incurable and there is no such thing as remission for you. I’m a little ashamed to say that I get angry when people I know personally will run a race for a cause that they have no personal ties to, but they won’t show up or donate to support research for my cause. I want to scream sometimes, because the world doesn’t even know yet what gene causes my disease, but those of us with rare diseases struggle to get people we know to care enough to help with fundraising for research. We struggle to even get the hospitals that treat us to care enough to sponsor our events.
It can be a lonely journey, but you aren’t in it completely alone. While many of us are not physically near each other, there is a community of chronic and rare disease patients who care about your situation and can deeply empathize with your struggles. We must care for one another. My peace in these moments of exhaustion comes from knowing that this sick, tired group of souls keeps going despite everything else going on in their lives. Because of them, I know that it’s okay to be tired some days, just as long as I get back up and keep going. Peace also comes from the loved ones that care so fiercely about me and are there to listen when I’m tired and angry and frustrated. However, it’s also important for the rest of the world to know how tired and frustrated we are. I talk about how exhausting and defeating the regularity of the piles of paperwork and hours on the phone can be, so that maybe one by one, more people will start to care enough to help us carry this burden. I am sure that tomorrow or the next day will be a better and more joyful day, but today, I need you to know that I am just plain tired.
Chronically yours,
Jen
