You Don't Know What You Have Until It's Gone: Life with Psoriatic Arthritis

You are probably aware of the old saying, “You don’t know what you have until it's gone.” I experience this so profoundly since my psoriatic arthritis diagnosis.

The nostalgia that comes with psoriatic arthritis

I look around at the world around me and see so many people, blissfully unaware of their physical privilege. And I see people taking their perfect hands for granted and making footwear choices that make their feet hurt on purpose.

People walk around, every single day, unaware of the physical privilege that they possess.

I miss my hands

I really don’t think people understand how much we use our hands, even on a minute to minute basis. That is, until every single movement involves pain. But not even only pain. But some days it is even worse when I realize how much strength and dexterity I’ve actually lost in my hands.

I have trouble doing even the seemingly simple things like driving my car and holding the steering wheel. Some days, that otherwise simple task takes all my concentration, focus, and strength.

I miss the dexterity I used to have for crafting or other hobbies that I used to love. Yes, some days I can still “do” them, but at a much slower pace and for a limited amount of time. I know I should be grateful for that and probably one day I will.

But for now, on the days that I’m hurting, I find myself jealous of those who just don’t seem to realize how good they have it. They have these perfect hands that do exactly what they should do when you tell them to do and they just seem to take it for granted!

I miss my feet

I’ve “waxed poetic” as they say about how much I miss my totally cute shoes. I’ve written endlessly about managing foot pain, toe pain, and knee pain. But really, when it comes down to it, I think I really miss the certainty in each footstep.

There are people walking around every day, putting one foot confidently in front of the other, they are not worried in the slightest that their steps might falter.

They don’t worry that their feet might not be strong enough to hold them upright or keep them from tumbling down like a giant Jenga tower. So many people have no idea how lucky they are!

I miss having energy

Can you imagine that there are people in this world who actually wake up refreshed and ready to take on the world? There are literally people, some who might even be living under the same roof as you, who don’t have to count the energy cost of everything on their to-do list.

And they have no idea how jealous you are of that! They have no idea what it is like to have to bargain with your own body while dividing everything into tiny mini-tasks with multiple planned rest breaks.

I miss planning for my future

I have these memories, thoughts long gone, where I believed that the future was filled with limitless possibilities. Yes, I know it is a bleak thought, but it is a reality for many of us.

The truth is that without getting our disease under some sort of control, we live with a progressive disease that limits what our body can do on any given day.

For many things, there exist “workarounds” but making changes to how you view your future is one of the things that we live with every day. I miss that wonderful feeling that I can confidently tackle any future project that I set my mind on.

Accepting the limitations that come with psoriatic arthritis

People sit around a waste so much energy doing nothing. And they take a bright, beautiful, and unrestricted future full of great projects and unlimited potential, totally for granted.

It breaks my heart to see such a wasteful attitude towards the gift that a future holds. Hands that grasp, feet that hold me up, and the energy to knock out my to-do list. These are just a few of the things added to the growing list of things that, “You don’t know what you have until it’s gone.”