If I had to estimate I’d say that I am in pain 95 percent of my waking hours.
Most people I know are shocked by this, but pain is my new normal. What’s unusual for me now are pain-free days. I average about four to five pain-free days a year. Not being in pain is weird. Not horrible, just weird. I’m not so much relieved about the pain being gone as worried about when it’ll come back.
It’s something I hear a lot from friends living with chronic pain, but it’s not an area of chronic pain many people talk about.
Is this what being normal feels like?
An absence of pain leaves me feeling fearful. Most people who are well have a hard time understanding why pain-free days can’t be crammed full of all the things we normally have to avoid.
We survive pain by always doing less than we want to. We hold back in every action or motion. We worry about pain getting worse every day. So when it leaves us, we may be more scared about the pain returning than we are thrilled that it’s gone.
Being pain-free is always the goal, but we’re more pragmatic than the people around us do don’t live with pain so casually. They remain optimistic about a future where pain doesn’t exist, whereas we appreciate that while it’s great that the pain has left us temporarily, it is exactly that and will return without much notice — at a time of its choosing.
Even if the pain doesn’t come back immediately, the payback for any pain-free days could be hours or even days later. In our temporary relief we worry for our future selves. The temptation to act like a healthy person is immense, but we know the pain will seem twice as worse once it returns.
We’re made to feel ungrateful for our ambivalence about days that are pain free, when we’re just being responsible. It’s not something that someone who is well can ever understand. A day’s relief is great, but it just makes the return of our pain that much more horrible.
It feels strange when the pain is quiet, because pain has become the white noise in my life, always boiling away while I carry on with things. Its absence feels so messy and complicated in a way being pain-free never used to be.
Being realistic
Even now there are still people in my life who believe that I’ll be well in some not-too-distant part of the future. They argue that I haven’t found the right solution to my problems. While well-meaning, these people can’t help by imply that old idiom of “you’re not trying hard enough,” that long-term illness is something that can be pushed through, fought against or bargained with. The reality is that chronic pain isn’t straightforward, it doesn’t follow convention, it rarely follows a pattern, it defies being easily categorized or treated, and that’s why many of us spend years finding our new, refined level of comfort alongside pain.
That’s not to say the way we cope each day is negative or wrong, we’re just being realistic. We live with this every moment of every day, not just in the brief moments of time that someone else decides to enquire about how we’re doing.
On getting better
I distinctly remember an occasion when a pain consultant said I was being too negative by thinking there wouldn’t be a time where the pain wasn’t present in my life. Upon reflection, it was very easy for her to make statements like that while not in pain herself. Other people can look outwardly into my situation and be quite convincing about their hopeful suggestions about where things might go, but ultimately we’re the people living with these diseases, and when you feel pain all day every day, it slowly becomes as natural as being alive.
However, I’ve lived with pain for around six years now, and I’ve seen the days where I am pain-free gradually decrease, and I am OK with that, because I don’t have any choice. Like quicksand, it’s better to remain calm and still and develop the patience that will allow you to be carefully be lifted out.
Bittersweet
It’s a bittersweet reminder of what your life once was — one I don’t want. It’s part euphoric and part tragic. I genuinely find myself trapped more than ever on pain-free days. At least with the pain I know where I stand as I carry on quietly (yet triumphantly).
Hopefully that explains why pain free days feel a little… complicated. That’s the only way I can describe it. You should be overjoyed to have a day without problems, but you worry about overdoing things and the payback when it pain comes back — because it always comes back. It would almost be stranger if it didn’t.
This blog was originally published on Endohope.
My name is Michelle. I’m in my thirties and I live in the UK. I’ve lived with endometriosis for seven years now. Like many women with endo, I suffered with extremely painful periods (silently and not-so-silently) for over a decade. I was also diagnosed with fibromyalgia in 2015. Endometriosis has many far-reaching implications on the life of a sufferer, and the loved ones surrounding that person. I hope to share what I have learned, to prove that there is hope for endometriosis sufferers, to show that it’s perfectly possible to live and work happily and successfully with this disease. Crucially I also want to provide advice for the darker days when that’s easier said than done.
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