Living with PsA A to Z

Living with PsA is:

Annoying

Seriously! Flares always occur at the most inconvenient times and they hurt like heck!

Baffling

Just when I think I have this wretched disease figured out it proves me wrong.

Crippling

There have been seasons in my chronic life where psoriatic arthritis and my other chronic illnesses made impossible to get around on my own two feet.

Depressing

Since my diagnosis in 2003, I have walked a fine line between hanging in there and falling into a deep depression.

Embarrassing

It is embarrassing to have people see me have the ability to do something one day and not the next.

Frustrating

Never knowing how I am going to feel or which area of my body is going to flare frustrates me to no end. It’s really hard to make plans when I have no idea how I will feel day to day.

Grieving

The first 10 years of my chronic life was spent grieving the life I had before my chronic illness took over.

Heartbreaking

PsA creates moments that have broken my heart, such as missing my children’s recitals, sleeping through holiday celebrations, and more all because my illness decided that a full-on flare was in order. Contrary to what some people think, it is impossible to push through every flare. You can’t will your body to do what it is not capable of.

Imaginative

Instead of accepting that there is nothing that can be done or that I could no longer do something, I have to use my imagination to come up with alternative solutions.

Judgemental

Living with PsA means being judged by my ability/disability for the rest of my life.

Knackered

Psoriatic arthritis comes with a side dish of fatigue that cannot be explained to the average person.

Lonely

People get tired of their chronically ill friend flaking out, canceling plans, forgetting to reply to texts, or not being able to do what they used to do. They move on.

Merciless

PsA has no regard for my feelings. It ignores me when I say I can’t handle any more pain.

Nefarious

This wicked disease likes to pull the rug out from under my feet whenever I find my groove.

Ongoing

There is no cure for PsA, it will be something that I have to deal with until the day I die.

Persevering

It’s about making it through each day the best that I can.

Quiet

Life with PsA gets awfully quiet when my sleep schedule flips or I am unable to join my family for previously scheduled events.

Reluctant

My reluctance to make plans or reserve travel arrangements goes beyond fearing a flare. I also do not want to lose money or have my husband waste vacation days from work if my body should force us to cancel.

Suspicious

Having a disease in which no one can see my pain makes it easy for outsiders to suspect that there is nothing wrong with me.

Terrifying

Because there are so many different symptoms and comorbidities that go along with PsA, I am frightened each time a new one presents itself.

Untrustworthy

I can no longer trust my body the way I used to which results in others not being able to trust that I will be able to follow through on the plans we make.

Vague

With an ever-changing pain level and alternating pain sources, explaining how I feel at any given moment isn’t easy. Instead, I opt for a simple, I am okay.

Wounding

PsA and my other chronic illnesses have given the medical community license to ignore complaints about other life-threatening injuries. The wounds of unbelieving medical professionals will live with me forever.

Xenophobic

Fear of triggering a flare made me fearful of trying new things. Thankfully this is something that I have been overcoming, but there was a time when it held me prisoner in my own home.

Yucky

Yep, that’s right. Life with PsA is yucky!

Zany

Last but not least, living with psoriatic arthritis is zany. Some of the ways that my body and mind behave because of my disease are truly comical.

What other words would you use to describe life with psoriatic arthritis?