Functionally Sick with Psoriatic Arthritis

Being “sick” isn’t a black and white thing. There are a million and one shades of grey, all mixed up together. Our days can’t be categorized by “sick” or “well.” Living with psoriatic arthritis or any chronic illness for that matter, just doesn’t work that way.

At a minimum, we live day to day bouncing between okay, tolerable, and basically dead. If I’m lucky, it might average out to be somewhere in the middle. Something best described as “functionally sick.”

Remaining functional with psoriatic arthritis

Today, I’m not in the hospital. I don’t have a cold nor the flu. But yes, I’m sick. I’m stuck in bed or on the couch. I got lucky last night. I made it out of the house, had a visit with friends and you can see my smiling face as evidence on Facebook or Instagram. I look well.

There are no outward signs of the fatigue I felt, the amount of energy I spent simply showering and appearing “normal.” There aren’t any giant bruises or signs on my body that would give away the underlying pain and fatigue.

Putting the fun in functional

There is no easy way to explain how I can be functionally sick when we live in an age where the main way to keep up with everything going on with friends and family is social media. I don’t post pics of my swollen fingers. There are no images of the enthesitis that I experience. I can’t hashtag the heck out of my brain fog.

When energy is in short supply or another wave of pain is just around the corner, do I need to explain or justify how I use that time? Should I add a caption to each fun picture on social media, “image of me attempting to be functionally sick.” Yes, I made it to that event, but no, I can’t make it to another one tomorrow.

The struggles of functioning with psoriatic arthritis

Being functionally sick means making difficult choices with what to do with that time. Throw in social media and all the shades of grey that we live with every day come shining thru. Being functionally sick means so much more than the black and white world of sick and well.

A few things that are helpful to remember if you have a loved one who is functionally sick:

• We can understand why you are confused.
• We want you to treat us “normally” and yet we want you to remember that we're “sick.”
• We want you to invite us out to places yet we may often have to cancel or tell you no.
• We smile and want to talk about everything, yet ask that you remember that we can’t always keep up.
• We care about you, yet brain fog keeps us from remembering important dates.

I know I can’t have it both ways. I know I ask so much of you with help, understanding, and support. And I feel like I have so little to give you in return.

There is no “well.” There is no “sick.” There is only all these shades of grey in between. Such is the life of the functionally sick.