What You See Is Not How I Feel

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I wrote this piece about three months ago, as I was realizing that I was going to have to make some very difficult decisions about my work and the rhythm of my life.  Since then, I’ve left a job, started to make steps towards recovery, and tried to lean into the very difficult business of publicly naming that I’m sick.  This experience, although it has lessened somewhat in itsintensity, remains true for me and so many people like me who suffer from invisible chronic illness.

If you watched me yesterday, you might have seen this:

7:30AM: Ben takes dog on a walk, picking up a neighbor’s vehicle at the docks and bringing it back up the road for them.

11:00AM: Ben drives Michael to daycare to drop him off and returns to the house to work.

3:00PM: Ben does an interview for his podcast.

5:45PM: Ben goes to work, where he finishes organizing a new collection and shelving books.

8:00PM: Ben goes home.

Here’s all the in-between stuff you would not have noticed:

6:45AM: Ben wakes up. He wonders, “Is this the day I’m going to start feeling better?”

7:30AM: Ben takes dog on a walk, picking up a neighbor’s vehicle at the docks and bringing it back up the road for them.

8:10AM: Clearly, this is not the day that Ben is going to feel better. He comes home and lies down on the couch, as he can quite get enough energy to sit up at the breakfast table. Melissa brings him his breakfast in the living room while Michael runs around. Coffee is just not helping this morning. When Melissa needs to take a shower, Ben lays down on the floor next to Michael in the play-yard, trying to keep him distracted.

Melissa tries to put Michael to sleep while Ben levers himself up onto the couch. He tries to read, but the words won’t cohere into sentences. He ends up watching television.

Nap fail. Melissa is already an hour late to work. Ben says, “I’ll take Michael to day care.” He takes a deep breath, pushes through the wobbliness in his legs like a runner on the last stage of a marathon, and gets Michael to the car.

11:00AM: Ben drives Michael to daycare to drop him off and returns to the house to work.

Ben lies down on the couch and works through e-mails. It takes him three times as long as it normally would. When Melissa comes home from, he staggers into bed and sleeps.

2:30PM: He wakes up. It’s go time! He pumps himself up, gets his office set up, and does his interview.

3:00PM: Ben does an interview for his podcast.

4:30PM: He finishes the podcast and wobbles downstairs. Melissa asks, “Can you really go into work tonight?” Ben responds, “I’ll only do what I have to.”

5:45PM: Ben goes to work, where he finishes organizing a new collection and shelves books.

6:15: Ben finishes shelving the new collection. He’s beginning to limp and he hopes that no one notices. There’s a pile of books that need to be re-shelved. He figures he can get them done if he goes slowly over the next couple hours. He puts his feet up gingerly and reads.

8:00PM: Ben goes home.

8:15PM: Ben brushes his teeth and crashes into bed.

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What you see is not how I feel.

These types of days have been my experience, on and off, for most of my life.

I’ve been passing for well since I was nine and got ME/CFS for the first time.

Normally, I maintain the appearance of wellness by taking from other pieces of my life.  I sleep more, drop my more demanding hobbies, let housework slide, let Melissa walk the dog, crash super hard on my day off, and so on.  It’s a necessary adaptation, and one that has been useful for me at times: it’s enabled me to keep jobs, maintain relationships, and hold onto hobbies that otherwise might have been swallowed up by sickness.

Before I became a dad, I could lay on the couch on my bad days and rest without hurting anyone. Now, those bad days mean that I’m not engaging with my son, not watching him grow, and making my wife be a half-time pastor and a full-time mother.

I’ve been sick for three and a half months now: the longest stretch I’ve had for several years. (Note: I’m now up to six months and running!) There never seems to be quite enough time for me to get better. Either I’m sick, or my work picks up, or Melissa’s work picks up, or Michael is sick or teething or not sleeping, or Melissa is sick. My well-honed bag of work-tricks (e-mails in bed are perhaps my favorite), no longer work to give me enough space to recover while still appearing like everything is okay.

The first person I have to “pass” with is myself.  My interior landscape is propped up by a thousand small mental negotiations: I’ll feel better when this next project is done, I can change my habits, I can eat better, I can go to bed earlier, I can work more efficiently, I can find a couple days just to rest.

It hard to admit that I am not a normal young adult male with a few health issues. For the time being, my career, my hobbies, my passions, are confined by my very, very real physical limitations and the immense price I pay whenever I ignore my limitations.

It’s terrifying for me, in all honesty, to name this.

I’m not terrified that you won’t accept me.

I’m terrified that you will pity me.

I don’t want to be your latest Tiny Tim. Despite all of this, I’ve made something of my life. I went to a top college, married an amazing woman, became a ministerial innovator, worked with the forgotten and marginalized, fathered an amazing boy, and found outlets for joy and connection that my super-sick, super-isolated nine year old self could not have imagined.  I’ve found ways to make meaning in my life and use my sickness as a resource to become a more complete human being.

But I do need your understanding. I need you to understand that when you say “How are you?”, I may say, “Fine,” even when I’m not, because I just don’t have the energy to get into it right now. I need you to understand that sometimes it will look like I’m giving you 50%, because I absolutely can’t give you anything more. I need you to understand that when I say no to your social invitations or work opportunities, it’s because I simply can’t pay the price that saying “yes” would entail.

I also need you to understand that I didn’t choose this and I’m still figuring out what being sick means. I always thought I would grow out of my illness. I always believe that in a moment like this, I would be in the thick of things, building community, going to marches, fighting for justice, being a mover and a shaker.

I need you to understand how painful it is to learn that enthusiastically following my ideals would mean writing checks that my body just can’t cash.

So, please just bear with me.

I may be as well as I’m making myself out to be or I may be far worse.

And depending on the day, neither you nor I may really be able to tell the difference.