Tuesday, March 7, 2017

Struggling With My Good Days As A Chronically Ill Person


    Most people hear the words “Chronic Illness” and think about all the bad stuff we associate with being sick: pain, fatigue, weakness… And it’s very easy for those of us who are diagnosed chronically ill to lose ourselves in that side of our lives, after all, it is the most prominent thing about being sick. But the truth is, no matter how few or far between, we do have good days. Days when we have energy, when we mercifully feel no pain, and when we feel productive and, dare I say, normal.
    BUT, these are days when we face special challenges that you may not even realize. You see, 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. So on days when we have no disease effects present, and nothing to compensate for, our minds can still hold us back. Here are some of the things we don’t discuss on our good days:

  1. (And this is a big one) What will everyone think? You see, as chronically ill people, we spend many hours trying to convince others that we are sick. That our illness actually exists. This even includes doctors at times. (There are still doctors that feel Fibromyalgia is all in the mind) We get accused of faking it all the time. So what is going to happen if we suddenly hop up out of bed and say, “Guess what? I feel awesome today!”? Those accusations will only increase. This is why too many of us don’t mention their 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 we’ve accepted an invite to lunch or shopping with friends. It will take us extra time to prepare. We take every precaution we possibly know to get through the day with no issues. Remember, we are feeling great that day and we really don’t want anything to ruin it. This includes the fact that there are probably more drugs in our purse than at a Colombian raid! But we won’t tell you we’re packing. And we’ll do anything not to use any of those meds, especially not in front of you. Even if you know all about our illness. Because it will kill the illusion: Normal For A Day…
  3. To continue with the ‘Normal For A Day’ theme: most of us will push to keep up. OK, lunch isn’t a push inducing activity, though I’ve been known to have a drink or two when I shouldn’t, some other activities are. Walking around shopping or at craft shows or nature walks can be quite difficult. And on a good day, we are essentially free of our disease. If not forever, at least for that day. So we will do our absolute best to keep going ALL DAY LONG. Even though we know there may very well be consequences tomorrow. And if we are starting to feel bad, we won’t tell you. Because we don’t want to. Kill the illusion and all, remember?
  4. Now comes the hardest for us to overcome. Understanding how much we just want to feel normal, when we actually do have a good day, many of us feel guilty. The reason is easy to understand: we live needing so much help from others that when we end up having a day when we don’t, we feel like we need to make up for it all. You see, none of us wanted to be sick. We’ve collectively lost jobs, or the ability to take care of our kids properly, to cook or to clean, to walk… We now rely on help to complete daily tasks. Which we accept, but which we really don’t want to need. So we feel guilty about that. So when we wake up to a pain free day, yeah, all we want to do is go out and have fun and forget we’re sick. But we feel like we should repay all that help and support we’ve been given throughout the rest of our illness. It’s a catch-22.

    So what are we actually supposed to do on our 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. We are what and who we are. We are chronically ill. We are fighters. We overcome. And we deserve joy as much as every other human being on the planet. So when our disease takes a break, we should too. Others who are not sick will never truly understand us, so don’t expect them too. Allow your mind to put aside any ideas of judgement or repayment. Just take what relief your illness gives and run with it. Fulfill yourself. Do something you know you couldn’t do in pain. And be happy.

             You deserve it! And you have an entire community of people supporting you!


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