It is hard to believe that a year ago I was in the middle of chemo. The first half of last year is kind of all a blur. I have struggled with this article because, well…it is kind of “boring.” Boring, when it comes to complicated health, is a gift, a good thing. Boring does not mean cured. Boring is just a slight lull in intensity.
Chemo is dramatic. It sounds dramatic, it is dramatic. It is simultaneously destroying your body in an effort to save it. The side effects are dramatic. The reactions people give when you tell them the news are dramatic.
“OMG!”
“Are you OK?”
“What can I do? I’ll do anything to help!”
“You need to go to the ER?!”
“You need to go to the doctor?”
“Are you dying?!”
On an almost daily basis there is something that needs to be done, tended to, helped, fixed, supported…and then (ideally) the treatment does what it was suppose to do. When that happens there exists this very tangible lull in the chaos of life. The types of friends who are only there in a crisis slowly drift into the background because the drama is now gone and things have become boring.
What a lot of people don’t realize is people who live with a chronic illness strive for boring. We want boring. I still have daily struggles, but the drama has ceased and it is now a game of maintenance and recovery. Frankly, no one really gives a shit about that. The thing is, we never wanted to be treated differently in the first place, it just comes with the territory sometimes. And now people don’t know what to do. This is more my personal frustration. Recovery for someone with a chronic illness is not that same as a healthy immune system recovering from the flu or a cold. Trying to put back on the muscle lost, fixing the diet of what wouldn’t be thrown up to normal food, dealing with the affects from the prednisone, are all very personal and quiet recovery struggles.
The time spent in treatment, when you had to refuse every invitation to go out and see people, have now created habits where people have stopped asking. One almost feels forgotten about. And not by anyone’s fault. It is just the rhythmic nature of things. You see old acquaintances and they have become nearly strangers. People say things like, “I haven’t seen you in forever,” and you have to politely bite your tongue from saying things back like, “Well, yeah – I was busy being injected and swallowing poison to keep my body alive, but it worked! So, here I am.” Instead you say things like, “I know things have just been so busy, but it is good to see you!”
You aren’t even mad at people because you are more grateful that the hell you just walked through had a less intense version on the other side of it. You are reminded that while your world consisted of medications, lots of naps, appointments with the porcelain throne, and bone broth, everyone else’s world continued to spin normally. Catching up is nearly impossible and so spoonies have to constantly accept that sometimes they are left behind. Sometimes they aren’t even a part of the story in some instances – and that is OK because we survived another day, year and treatment.
Follow this journey on The Better Half of Me.
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In 2010 I was diagnosed with Lupus and finally so much made sense. I am a PR Manager for a non-profit I cofounded in Uganda and occasionally blog.
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