This meme appeared on my Facebook feed last week and I knew immediately that it would inspire a post. If it’s not clear on your device, it says, “Just because someone carries it well doesn’t mean it is not heavy.” This is the source of much of the dissonance in my life.
I like to look like I have it all together. I’ve come a lot farther than anyone expected me to, and I’m proud of that. At the same time, though, I want some people to see what it takes to put up that front.
Yes, I look fine. Even good sometimes. That’s because I’m on strong pain medication to this day. In order to go out and enjoy an evening with my friends, I have to drug myself. It’s not optional. The meds help so much that sometimes I forget I’m on a bomb clock, ticking down to a row of red zeros that say “time to go home, and you’re already too late.” I’m into tomorrow’s energy reserves. That’s why I never schedule two evening activities in a row. I need recovery time in between.
In order to present this happy, normal front to you, my personal care routine makes Dolly Parton’s beauty regimen look easy.
When I leave work early to go bike riding or swimming, my neighbors shake their heads—they wish they could do the same. Mind you, I enjoy bike riding and swimming, but if I didn’t do those things, I’d pay dearly. I lose ground fast when I miss my exercise. I often feel stressed when I leave for my ride, because I haven’t finished my work and I have to go back to it when I get home. I rarely skip the exercise in favor of work, like a person in an undamaged body might do, because ultimately that reduces the amount of time I’m able to spend working. The exercise is even more important, because without it, the work doesn’t exist. But try to explain that to the clients who are waiting for their reports.
A few times I’ve posted on social media about a great evening out I had, then the next day, posted about the shadow side—the pain I felt during the evening and the hard recovery time afterward. I did this not to get pity, but because I felt like I’d filtered out the parts of my experience that my friends don’t want to see, and in doing so, made myself invisible.
When my sister texts me selfies from baseball games, I feel the hard stadium seat she’s sitting in and I know what it costs her to have that experience. She knows I know this; others in her life may not.
My friend and frequent inspiration, Heather Thompson, often posts about the treatments she goes through for her various issues associated with dysautonomia https://blogs.psychcentral.com/hidden-disabilities/2019/11/did-you-miss-dysautonomia-awareness-month/. After I made the post for Dysautonomia Awareness Month, Heather commented that it made her feel seen, and I felt the emotion in her declaration. That’s all we want—not pity, not efforts to “fix” us, but just for our friends to bear witness and understand what we live with. This is part of us, and you can’t really know us without knowing that side of our lives.
When people say obtuse things like, ‘It’s so good to see you back to 100 percent,” that’s deeply hurtful. I’ll never be back to 100 percent, and it shows me that the person who said that doesn’t understand what happened to me (or the notion of full recovery wouldn’t enter their minds), and that they based their assessment entirely on their own observations and didn’t bother to ask me how I am.
I tend to be a face-value sort of person; I wait for people to share things with me if they want to and I don’t pry. But on the other hand, I don’t assume I know what’s going on when I haven’t asked. If I normally hear from a friend regularly, I won’t assume their silence means they’re mad at me, I’ll ask, “Hey, are you okay?” and let them tell me what’s responsible for their silence, whether it’s an attack of a chronic illness or a surprise visit from a grandchild that’s taking the time we normally spend in contact.
This probably resonates with a lot of you; if you’re not a complainer, people assume nothing is wrong. You may take pride in your ability to function well—and you should. That comes at the cost of our own visibility sometimes.
How do you cope with this? Any stories you’d like to tell?