Please don’t come visit me at home

My home is my sanctuary.

That’s probably true for a lot of people.

But for me, with a chronic pain illness, it’s the one place I can breathe and just be me. I don’t have to smile or fake how I’m feeling or live up to anyone’s expectations.

I would guess others with invisible illnesses get that but most people don’t quite understand. They see you one way in public and think that’s who you are. I mean, why would they think any differently?

But it’s really just a mask to the part I play in public.

Or maybe, it’s who I was in my first life … you know … pre-chronic pain illness. And maybe who I really am inside, under the mask.

But at home? At home, I can be myself. My home is my sanctuary.

Please don't come visit me at home. Chronic pain illness. Fibromyalgia. Invisible Illness. My home is my sanctuary.

The problem, though, is that people want to come over to visit (is this normal? do you have people wanting to come to your house to visit regularly? maybe you don’t, but Mormons have this program called visiting teaching where we care for one another since we don’t have paid ministers. don’t get me wrong, it’s a fabulous program, but it can really be annoying for my circumstances. anyway…)

I don’t want them to come visit me.

I’m always looking for an excuse. It’s not that I don’t like them. Or that I wouldn’t have wanted to spend time with them in my first life.

But now? It’s just so much work.

And I’m not even talking about housework. Which would keep me in bed for days.

What I’m talking about are simple things like having to get dressed. Getting out of my pjs and into real clothes. That can be so physically demanding some days. Taking a shower can be exhausting.

And then when they’re actually there, I have to fake how I’m feeling. You know, smile, seem interested, share, ask questions. I have to sit in a chair and try not to cower in pain or shift too many times to make it obvious that I’m so uncomfortable. Not sigh loudly because it’s so overwhelming. Basically act as if there is absolutely nothing wrong.

Why do I do this? It’s no secret to most people that I have a chronic pain illness.

It’s because no one wants to spend time with someone who’s grumpy or far worse. Just ask my family.

Also, most people forget I even have an illness when they’re around me. Or they don’t understand how bad it is. Frankly, no one really knows how bad it is.

So when they ask if they can come visit, and I’ve run out of excuses, I finally just say I can’t handle it because of the pain. And they make their apologies and ask if there’s anything they can do.

Fast forward a week or two or a month and then they ask if I’m feeling better yet and if I want a visitor.

{swear words upon swear words under my breath}

Um, no. I haven’t felt better in years. But I’ll let you know when it finally happens and have you over.

I don’t say it that snarky but it’s how I feel (I’m really just tired of being asked if I feel better yet).

And it’s not just friends or visiting teachers who want to come over. My daughter’s boyfriend has come up to our cabin a couple of times in recent months. We had some fun with games and food but it was torture on my body. And faking how I’m feeling for any period of time is exhausting.

We’re also remodeling our house and my dad, who is retired, comes over every few months to help. And I dread it (sorry dad, don’t take that the wrong way). I’m so incredibly grateful and blessed with parents who do so much for us. But I feel I have to be more present when he’s around and not just in my bed all the time. Although I know he’s understanding, I still feel guilty if I don’t.

My home is my sanctuary. I can be free to just be me. To be real. No faking. Sorry family. Everyone else gets the best of me when I’m in public at your school activities and events and at church … and you, well, you mostly get the garbage.

I mean, I try to not be awful with them. But if you could imagine having a toothache for weeks at a time, how would you react when you’re kids are fighting or not doing their chores?

So what’s the solution? I’m not sure there is one. Except that I need to stop feeling so guilty when I say no.

Dietrich Bonhoeffer, the German pastor and anti-Nazi dissident, said the home is “a kingdom of its own in the midst of the world, a stronghold amid life’s storms and stresses, a refuge, even a sanctuary.”

Despite all of the chaos of life and family and this illness, I’m so very grateful that my home is my sanctuary.

(and I do take showers😉)


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