Up until today, I’d forgotten that I’d spent most of my twenties in pain. In fact, I didn’t even realize exactly how much pain I’d been in until I started to feel it again.
For years I had spent days and weeks where things just felt off. I’d wake up in the morning, and it was as though all the nerve endings in my body had become more sensitive, like someone had turned up the dial on my ability to feel pain. As soon as I’d open my eyes, I could tell what kind of day I was in for.
Then there was my skin. Sometime in my mid-to-late teens, I’d developed a painful skin condition, one that would last for weeks and leave scars when it finally went away, only to return again a few weeks later. No medication, alternative therapy or at-home remedy helped – and believe me, I tried them all. Some days, all I could do was sit and cry and read posts on online message boards about other desperate people who had covered themselves in turmeric paste, or cut out gluten or, I dunno, built a shrine to the imaginary god of healthy skin, to whom they prayed daily. Nothing worked, and I didn’t know if anything ever would.
And then, of course, there was the depression. The invisible pain that came and went and came and went until finally it came and stuck around for far too long. It was its own entity, a problem that I know now would have existed even if all the other painful things hadn’t, but it certainly didn’t help matters that I had pain on the outside rivalling the pain I felt on the inside. And the thing about depression, the thing that makes it so difficult to avoid, is that it leaves it own trail of breadcrumbs. Once you’ve worn a path to Depression in your mind, each visit back happens easier and quicker than the one before. It’s awful, but also familiar, like a toxic friend you know you should hate but don’t. And no one can see it happening until you’ve fallen way too far down the rabbit hole to help yourself.
One day, I went to visit my dermatologist, asking him for yet another prescription – something, whatever – that could help my recent flare up of hell and misery. “There is one experimental option I’ve read about recently in medical journals,” he said. “I don’t know if it will work, and you’ll have to pay for it because it’s technically considered cosmetic, but I thought of you when I read about it, and I’d be happy to give it a go if you want to.”
Over the next few months I signed up for the most outrageously painful, horrifying (and also expensive!) laser treatments I’d ever experienced, which also brought with it plenty of miserable side effects. I cried, and drugged myself full of Percocet on the particularly bad days, but eventually, it worked. The flare-ups stopped coming. The wounds that never healed finally did. The pain I’d felt every day for years had gone away.
The rest dissipated eventually too. I worked with an incredible endocrinologist who believed that my off-feeling, sensitive-nerve-endings misery was indeed real, and we figured out a solution. The depression left too, in time, and not without a fight, but it did. We moved on and bought a house and had some babies and lived through the NICU, and then bought another house where we now live with our two amazing miracle
babies toddlers, and I forgot about how awful I used to feel because I’d been able to feel good enough for long enough that it seemed like maybe it was never quite as bad as I imagined.
Until today, that is. I had to take a course of medication that I knew would throw me into a painful tailspin, and indeed it did. This morning I woke up, feeling off, skin flaring, not wanting to get out of bed and shower or go outside, and I remembered. This was how I used to feel most days, and feeling it again I realized that I was absolutely not making it up. I was sad and frustrated to be feeling it again, scared to think it might all come flooding back forever, but also, more than either of those feelings, I just felt really sorry for the girl I used to be who thought this was all a figment of her imagination.
The worst part about invisible pain is that it isn’t something others can easily relate too. It doesn’t look like a broken arm or a black eye, or the flu or…you name it. You still look like yourself. And it’s really hard to explain to others. Everything hurts. I’m absolutely exhausted and I can’t get out of bed. I just want to sit at home and cry. Well-meaning friends and family offer unhelpful advice. “Maybe if you take a walk/get in the shower/stand on your head/drink this homemade organic green juice with extra fibre and magical powers you’ll feel better”. But you won’t. You never do.
You cancel your plans with friends, the way you’ve done a million times before because all you want or can do is stay at home in your pajamas, and you can hear the frustration in their voice. They might not say it, but you can hear it loud and clear: “You always cancel. I know you’re faking. Get a new excuse.” I remember hearing this tone and silent eye-roll again and again from certain girlfriends and thinking, she’s right, i’m just lazy and overdramatic. But I wasn’t. I was just in a lot of pain.
I’d admit that I’ve thought those silent judgements about others too, the friends who you know are going to cancel whenever you try and make plans in advance, the ones who always have an excuse. But now, at least, I know a little better. Now I’ve learned to stop and ask the question that few people ask. “Did something really come up, or are you struggling today?” I’ve found it’s usually the latter, and furthermore, that it’s a legitimate excuse to need to cancel plans. It also gives me the chance to say the other words that no one says: What do you need right now? I’m coming by to help.
On my list of ultimate, genie-in-a-bottle life wishes, “not having any weird pain issues ever again” is pretty high up there. I’m sad for the years I spent feeling guilty for my own misery, and I’m scared that one day I’ll end up back there again. But, if nothing else, my experience taught me that the pain you cannot see is probably the most common pain there is. It’s the one we all think we’re the only one feeling, and it’s the one we all suffer with in silence, thinking that nobody else will understand.
My hope is that, eventually, one day, we’ll realize that invisible pain is still pain, deserving of empathy the way any other kind of pain would be. But until then, what I want to say to everyone who feels like the whole world thinks they’re faking is that your pain is real. I’m sorry you’re feeling it. You are not alone. Please hang in there.