Life in The Middle

Psoriatic arthritis is a tricky little devil. It affects everyone a little differently. On top of that, nearly each day with this disease is different than the one before. There are good and bad days.

Some days are really bad. But more often than not, I find myself somewhere in the middle. Life in The Middle, with one foot in the living and one foot in the nearly dead, is ridiculously frustrating. I should feel lucky. Here in The Middle, I guess I should feel lucky.

I try and tell myself, “Count your blessings! At least it isn’t a BAD day!” I berate myself, “Well, aren’t we ungrateful!?!?”

And yet, here in The Middle, I just can’t seem to muster much gratitude at all. I don’t feel lucky, I just feel uncertain. I find myself able to do some things and not other things. It is so frustrating!

Getting people to understand and remember that I am, in fact chronically ill, is difficult enough. It is made even harder when I’m feeling “kind of” sick. For example, I can go to dinner, but I can’t make it thru a whole movie. Half the time I barely understand it myself. How can I expect others to understand it?

Oh, the frustration

It is frustrating (for both of us) trying to explain to those I love why I can meet for a quick lunch, but I can’t go shopping. Or perhaps why I was able to work for a few hours, but I’m totally useless now. Brief moments spent smiling on social media for a fun pic hide the throbbing pain in my back or the fatigue I feel down to my bones. Yes, The Spoon Theory is helpful, but it doesn’t always tell the whole story.

Fighting the stigma of what it means to be “sick”

We live in a world where the mentality is either we are sick or we are healthy. When you are sick, you are bound to your bed taking fistfuls of medication and rarely doing anything else. Just picture all of the winter flu commercials when the patient is in bed, surrounded by a thousand tissues and you will get the idea. Then when you are well, you have boundless energy, are “normal,” and can resume all of your activities.

Straddling good and bad days

But the reality is that when you have a chronic illness, many of us find ourselves living somewhere in The Middle. We have one foot in the world of the healthy and one foot in the world of the sick. Yet mysteriously, I often feel uncomfortable in both.

The middle

Sometimes the medicine is working and I can do things. The weather is just right and all the stars align allowing me to do some of the things that I love to do, like visit with friends. But at the same time, I’m easily tired and if I overdo it, then I’m right back to being couch-bound.

Do you ever find yourself stuck in The Middle? How do you gets friends and family to understand that while you are feeling relatively “okay,” you are still in fact, chronically ill?