The Hardest Part of Dealing with Chronic Illness

Tomorrow two of my nieces are graduating -- one from elementary school and one from junior high school -- and I won't be able to attend either graduation. I'll tell my nieces how much I love them and how proud I am of them, but that I'm just too sick to be there on their special day. Hopefully they'll understand and know that I'm telling the truth. But if they haven't wondered this already, chances are that they'll begin to wonder how often one person can be so sick. Too sick for a holiday, too sick for a Sunday dinner, too sick for a party, too sick for a graduation ... How many times can one person claim to be sick before it seems like a lie?  


Coming from someone who's chronically ill, I'm pretty sure that people think I lie a lot. I can't count how many times I've had to cancel my plans because I was just too sick to keep them. How can you plan for something next month when you live life hour by hour? 


That's the real kicker about being chronically ill. It's not just the pain or the illness. It's your fear that other people will hate you for what you cannot help; that people who you care about will resent you for not being stronger or more reliable or more normal. Those are all the things you wish you could be -- all the things you've always wanted to be -- but you'll probably never be any of those things. You can go to all your doctors' appointments, take all your meds, try every new treatment that comes out, and research medicine harder than any med student, but it won't get you anywhere. 


You'll always be chronically ill. 


You'll always be different.


You'll never be normal. 


That concept is hard for most healthy people to grasp and even harder for most chronically ill people to accept. But hard as it may be to handle, it's the truth. Chronically ill people do not have the simple luxuries that most people have. Keeping plans, running errands, making it to a graduation, gossiping over coffee, or even catching one of your favorite shows in its actual time slot can be all but impossible. When you're so sick you can scarcely get out of your bed, even the most mundane things in life feel like heavy labor.


Most people don't understand the difficulty in everyday living, though. They may try to be helpful by cheering on the chronically ill person, but all the advice becomes something like elevator music. You can faintly hear something you've already heard before, but it's just background noise. It's all just things you've already heard before.


"Maybe some fresh air will help."


"Buck up and do what you need to do."


"You would feel better if you got out more."


"Why don't you just come out for a little while?"


Those things all sound good in theory but never work in practice. After a while you hear the same things so many times that you learn to tune them out. Not so much because you want to but because you have to. You would kill to have any of those bits of advice work but you've already tried again and again and again. Unfortunately, your illness isn't something you can get through or ignore. It's there with you all the time and the only way you can get better is to do exactly what you've been doing: stay away from the fresh air, ignore what you need to do, and avoid going out for any length of time. You have to let your body recover and remember that there will be just as much fresh air, housework, and socializing opportunities when you feel better.


The only problem is that you're always scared that there will be fewer people to share those things with you when you finally feel well enough to get out there. As much as it hurts -- literally and figuratively -- you have to wait things out and hope that your social circle will understand. After all, it won't do anybody any good if you go out with them while you're at your worst. Nobody can enjoy a celebration while Sick Girl is spreading her miserable aura. 


That's what I keep reminding myself as I mentally prepare for any hostility that may arise from me missing two very important graduations tomorrow. My migraine won't improve if I clap hard enough. My nausea won't go on standby while I wait to see the right people cross the stage. My numbness and tingling won't stop while I try to be steady with my fork. None of my many problems will improve if I force myself to go out. Instead, they'll get worse. I'll get worse. And that will just lead to more events that I won't be able to attend, more people I'll disappoint, and more reasons I'll find to hate myself.


That's how it is 


every


single 


day 


when you suffer from a chronic illness.


So if you know someone who has severe medical problems, do both yourselves a favor and cut him or her some slack. Nobody wants to be sick all the time. Nobody wants to disappoint their loved ones. Nobody wants to hate themselves for things that are out of their control. But those are the side-effects that aren't listed on any pill bottle and they're pretty universal amongst people with chronic illnesses.


When it comes to medical problems, that's just a glimpse into a fragment of one issue. Soon I'll be launching a sister site that goes into a lot more detail about chronic illness, specific medical conditions, and testimonials from a variety of people who are chronically ill. If you want to share any of your stories, please email me to let me know what type of illness you would like to talk about or if you're writing as someone who supports a person who is frequently sick. I'll have the website up by the beginning of July and I appreciate anybody who wants to help. 


In the meantime, I want to offer my sincerest congratulations and apologies to my nieces. If you ever read this, know that I love you very much. Someday I'll do my best to make this up to you. I just hope you can forgive me until that day comes.