4 Things I Don't Discuss on the 'Good Days' of My Illness
Most people hear the words “chronic illness” and think about all the bad stuff we associate with being sick: pain, fatigue, and weakness.
It’s very easy for me, someone diagnosed with a chronic illness, to lose myself in that side of my life. After all, it is the most prominent thing about being sick. But the truth is, no matter how few or far between, I do have good days. Days when I have energy, when I mercifully feel no pain, and when I feel productive and healthy. But, these are days when many of us face special challenges that others may not even realize.
When someone spends most of their life compensating for effects of a disease that has caused in them develop a certain mindset, that mindset is very hard to let go of. On days when I have no disease effects present, and nothing to compensate for, my mind can still hold me back.
Here are some of the things I don’t discuss on my good days:
1. What will everyone think? As someone with a chronic illness, I spend many hours trying to convince others that we are sick, that my illness actually exists. This even includes doctors at times. (There are still doctors who feel fibromyalgia is “all in the mind.”) I get accused of faking it all the time. So, what is going to happen if I suddenly hop up out of bed and say, “Guess what? I feel awesome today?” Those accusations will only increase. This is why I don’t mention my good days. Which is sad, because we all deserve to take advantage of any good day we have to take a break from the constant weight of these diseases.
2. The next step, though, would be actually taking advantage of our good days. Say I’ve accepted an invite to lunch or shopping with friends. It will take me extra time to prepare. I take every precaution we possibly know to get through the day with no issues. Remember, I am feeling great that day and I really don’t want anything to ruin it. This includes the fact that there are probably more drugs in our purse than you realize. I’ll do anything not to use any of those meds, especially not in front of you. Even if you know all about my illness. If I do, it will kill the illusion.
3. Most of us will push to keep up. OK, lunch isn’t a push inducing activity, though some other activities are. Walking around shopping or at craft shows or nature walks can be quite difficult. And on a good day, I am essentially free of my disease. If not forever, at least for that day. So, I will do our absolute best to keep going all day long, even though I know there may very well be consequences tomorrow. And if I am starting to feel bad, I won’t tell you, because I don’t want to kill the illusion and all, remember?
4. The hardest part to overcome is understanding how much I just want to feel healthy when I have a good day, many of us feel guilty. I live needing so much help from others that when I end up having a day when we don’t, I feel like we need to make up for it all. You see, I don’t wanted to be sick. In the chronic illness community, we’ve collectively lost jobs, or the ability to take care of our kids properly, to cook or to clean, and to walk…Many of us now rely on help to complete daily tasks, which I accept, but I really don’t want to need. So, I feel guilty about that. When I wake up to a pain free day, yeah, all I want to do is go out and have fun – and forget I’m sick. But I feel like I should repay all that help and support I’ve been given throughout the time of my illness. It’s a catch-22.
So, what are those with chronic illnesses supposed to do on their good days? I say we truly need to put our diseases behind us.
I get that it’s not easy to do. It means not only letting go of our personal attachments to what our lives have become, but to also letting go of what society has programmed up to think. I am what and who I think I am. I am chronically ill. I am a fighter. I overcome.
I deserve joy as much as every other human being on the planet. When my diseases takes a break, I should, too. Others who are not sick will never truly understand my experiences, and don’t expect them too. I allow my mind to put aside any ideas of judgement or repayment. I just take what relief my illness gives and run with it, fulfilling myself. I do something I know I couldn’t do in pain. And be happy.
I deserve it – and I have an entire community of people supporting me!
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Thinkstock Image By: JenniferEileenRich