The Most Difficult Part of Life with Psoriatic Arthritis

There are a great many difficult parts of living with psoriatic arthritis. There is the pain, joint damage, fatigue, and complications from the medicines just to name a few. All of which combined can cause a great deal of stress and anxiety. While obviously challenging and painful, these challenges don’t quite merit the dubious distinction of “Most Difficult.” That honor is reserved for one thing, uncertainty.

What makes uncertainty worse than all the others?

I am a natural planner. Not that I’m necessarily good at making plans. Rather, I like having everything laid out. I like to know what is going to happen, what is on the agenda for the day. When you live with psoriatic arthritis, planning becomes very difficult. Most of the time, I don’t know each day or even throughout the day, what I’m going to be capable of doing. My loved ones and myself have been disappointed on more than one occasion because I thought my body would cooperate with an activity, only to find out that it wouldn’t. When you live with the uncertainty of what kind of body you will have from day to day, it makes planning activities very difficult.

An uncertain future filled with questions

Not only do I enjoy planning my day, I also work very hard to plan for the future. With psoriatic arthritis, the future feels like one big question mark. This uncertainty makes me angry, frustrated, and above all, scared. I can’t plan for such an uncertain future. I don’t know what my life will look like tomorrow, how can I know what it will look like in a year? Or five? Or even ten? Will I find a medicine that will stop the damage? If I do, how long will it work? Do I have to plan for life in a wheelchair? Will I have to sell my 2-story house in favor of a ranch? I don’t have the answers to these questions and they all combine and lead to more questions, more uncertainty.

Amid all of the questions, what do I know?

• I have reason to hope- The medical community is making great strides every day in diagnosing and treating psoriatic arthritis. Our society is more accepting than ever in our history of people living with disabilities of all kinds. There is a whole world of products designed to make living with psoriatic arthritis easier and less painful. All of these give me reason to hope that the future doesn’t have to be so uncertain.
• I have a powerful and supportive community- Since my diagnosis, I have been blessed with the love and support of an amazing online community of people. You lovely lot have shared your knowledge, understood my pain, and let me vent my frustrations in a safe judgment-free environment. I am amazed every day by the strength and determination to live shown by my fellow warriors.
• I have faith- Yes, sometimes it is hard and my faith falters. But I know in my heart that God has a plan for me. A plan that allows me to make a difference for others. A plan that allows me to use my gifts to make the burden that others carry a little lighter. While I may not know all of the answers, there is someone that does. When I am feeling uncertain about my future with this disease, I take comfort in that.

Even though living with PsA is difficult

When I am struggling with the most difficult part of this disease—the uncertainty—I hold fast to what I do know. These three pillars; faith, hope, and support see me through the darkness and shed light on valuable answers. I may not get the answers to all of my questions and uncertainty, but there is comfort to be had in the knowledge that I am not alone.