Writing From the Couch — Part 1 of 5

There are things I have wanted to explain for years but haven’t known how to say.

Why I disappear. Why I cancel. Why I don’t answer. Why I can seem relatively functional one day and be completely unavailable the next. Why someone might see me at an appointment or posting something on Facebook and wonder, “If she can do that, how sick can she really be?”

There are harder things I haven’t known how to say, too.

That I grieve the person I used to be. That I sometimes question my worth when I can’t contribute. That finding my calling didn’t heal me. That I don’t understand why God would give me a gift I sometimes struggle physically to use.

After more than a decade of living this way, I still don’t have a beautiful explanation for all of it.

This is my attempt to tell the truth anyway.

If you’ve reached out to me sometime over the last ten or eleven years and I disappeared, this is for you.

Maybe you texted, and I never responded. Maybe I promised I’d call and didn’t. Maybe I enthusiastically made plans with you and canceled at the last minute. Maybe I started something with you and couldn’t finish it. Maybe you wondered whether I was ignoring you, avoiding you, being flaky, or simply didn’t care.

I want to finally tell you where I’ve been.

I’ve been on my couch.

For most of the last eleven years, my couch has been the baseline of my life. Not because I wanted it to be. Not because I’m lazy, antisocial, dramatic, or unwilling to push myself. My body simply stopped allowing me to live the life I used to live.

There have been better stretches. Days when I’ve functioned well enough to go somewhere, work on something, make plans, or start believing I might finally be turning a corner. I’ve gone to appointments and done the things I’ve absolutely had to do.

But there have also been times I’ve had to cancel things I desperately wanted to do. I’ve canceled vacations at the last minute and lost deposits because, when the day came, I simply wasn’t physically able to go.

Even the big things. Even the fun things. Even things I’d been looking forward to.

Wanting to do something has never guaranteed that my body will let me do it.

And then I’d disappear again.

Sometimes for days. Sometimes weeks. Sometimes months.

This may be one of the hardest things for me to say:

I don’t really remember my 40s.

Of course I remember people, events and moments. But when I look back at that entire decade, it isn’t divided into years by adventures, careers, accomplishments, trips or all the ordinary milestones that normally make one year feel different from another.

So much of it blurs together into pain, debilitating headaches, fatigue, doctors, surgeries, procedures, appointments, treatments, trying something new, getting hopeful, crashing, recovering and starting over.

And the couch.

So much time on the couch.

My 40s didn’t exactly pass me by. They floated by while I was on the couch.

I wasn’t building many memories.

I was getting through days.

Somehow, those days became a decade.

Invisible illness creates a strange problem: people naturally judge what they cannot see by what they can see.

I’m thin now. I know that’s one of the things people see and sometimes associate with being healthy. But my weight itself has changed dramatically throughout all of this. At one point I was about 40 pounds heavier, gained largely during my health struggles. Later I lost the weight again, also during my health struggles.

Neither version of my body told the whole story.

And yes, sometimes you see me out.

Usually it’s because I have a medical appointment or something else I simply have to do. I can get dressed, get in the car, sit in a waiting room and have a conversation.

Sometimes.

Other times I cancel those appointments at the last minute because I can’t even manage that.

When you happen to see me functioning, you’re seeing one small window of my life. You aren’t necessarily seeing what it took to get me there, what I couldn’t do beforehand so I could go, or what happened when I got home.

Being visible is not the same thing as being well.

I’ve had people doubt me. I’ve been told or made to feel that I’m exaggerating. I’ve had people look at my circumstances and tell me how “easy” my life is.

I understand part of what they’re seeing.

I have an amazing husband who takes care of me. I know how fortunate I am to have that kind of love and support.

But please don’t confuse being cared for with having an easy life.

An easy life, to me, would be having the physical ability to cook dinner for my husband because I wanted to. It would be cleaning my own house, working and contributing financially, helping my family, socializing, traveling and doing ordinary things without first calculating what each one might cost my body.

It would be saying, “I’d love to,” without immediately wondering, Will I physically be able to?

I am profoundly grateful for everything my husband does for me.

I just wish he didn’t have to do so much of it.

Dependence does not feel like a vacation when independence matters deeply to you.

There are assumptions about this part of my life, too.

I’m not on disability. And despite serving 21 years in the military as a reservist, I’m not sitting comfortably on some large military retirement. Any retirement associated with that service is still years away and relatively small.

I have spent years trying to figure out how to work around my health.

I’ve started businesses. Built websites. Created projects. Researched ideas. I’ve repeatedly searched for something flexible enough that I could work when my body allowed it and step back when it didn’t.

The pattern has been painfully consistent.

I’ll feel better. I’ll get excited. I’ll start creating. Momentum builds, and I begin thinking, Maybe this is finally it.

Then my body pulls the emergency brake.

A flare comes. The pain gets worse. The headaches take over. The fatigue and brain fog follow. Days disappear. Sometimes weeks.

The momentum I worked so hard to build disappears with them, and another promising thing slowly dies because I can’t give it the consistency it needs.

Then I start to feel a little better. I get hopeful.

And I try again.

I don’t want a free ride. I want to work. I want to contribute. I want to earn. I want to help my husband. I want to give something back to the world.

I want to be useful.

That desire has never disappeared.

My ability to act on it consistently has.

For years, silence seemed easier than explaining.

How many times can you say, I’m not feeling well?

How many plans can you cancel before it sounds like an excuse?

How many messages can you leave unanswered before someone reasonably concludes you don’t care?

How many times can you say you’re trying when, from the outside, it looks like you’re sitting on a couch doing nothing?

Eventually, I stopped trying to explain.

But silence leaves an empty space, and people understandably fill empty spaces with their own explanations.

Lazy. Flaky. Unreliable. Exaggerating. Antisocial. Lucky. Easy life. Doesn’t care.

I’ve carried some of those judgments—real and imagined—for a very long time.

I’m not writing this because I want pity. And chronic illness doesn’t erase the impact my absence may have had on other people.

There are people I genuinely owe an apology for the hurt my silence caused.

But there are also many people I simply want to finally give an explanation to.

This is where I’ve been.

And to understand why losing this life has hurt so badly, you first need to see the life I had before.

Next in Writing From the Couch

Part 2: Between a Rock and a Hard Place
Grieving the Life—and the Person—I Used to Be

[Part 1 Where I've Been— The Life You Didn't See]

[Part 5: I Found My Purpose. I'm Still Sick. — What Purpose, Faith, Work, and Chronic Illness Look Like When There Isn't a Neat Ending — Coming Soon]