No, I’m Not Too Young for Psoriatic Arthritis

When I tell people that I have Psoriatic Arthritis (PsA), I often get the comment, “You are too young to have arthritis.” People instantly associate the word “arthritis” with aging, but I do not have osteoarthritis. I have an autoimmune disease that causes my body to attack itself. The main areas where the disease causes issues is with my skin and joints.

I was diagnosed in my early 20’s after I finally found a doctor that would listen to me. At the time of my diagnosis I cried happy tears because I finally knew that the pain I was feeling every day was real.It had a name. There were treatment options. I could get back to normal life. At least that is what I had thought in my naive relief.

I had a couple doctors that had made me feel “crazy” or like I was being dramatic, but I knew the pain I felt couldn’t be normal for anyone. Autoimmune diseases are often referred to as “invisible illnesses” due to the fact that those of us living in these situations look fine from the outside. The most frustrating part at times living with an autoimmune disease is the need to feel like you have to justify how you feel when you can’t go and do things as you used to, but the worst part is when you don’t feel like explaining how bad you feel so you put on a fake smile, grin, and bear it to not inconvenience others around you. This is even the case when dealing with people in the medical community. Over the past 10 years or so I have been shocked at the number of doctors and nurses who are clueless about autoimmune diseases. I actually had an ER doctor who uttered that phrase I have learned to loathe, “You are too young for that.” Thankfully for her, she was from the North so when I replied, “Bless your heart,” she thought I was being nice.

Within the past couple years my disease process began progressing and I myself, did not want to believe it or deal with it. When I would put my feet on the floor in the morning, every joint in my tiny toes felt so stiff. It is a pain that makes you suddenly very aware of the tiny joints in your toes that you had once taken for granted. I would try to brush my hair and I would drop the brush because I could not keep a tight grip. My handwriting was becoming atrocious because the motor skills that are needed to grip a pen had been compromised. Doing my daughter’s hair became difficult. Having a biracial daughter with kinky hair requires a much higher level of hair care. As a mom, this was an incredibly hard pill to swallow for me. My choices were to let her go to school with all of her frizzies everywhere or push through the pain knowing that for the next hour or so my hands would feel like they were transplanted from the Tin Man in the Wizard of Oz. The only difference was a little bit of oil wasn’t going to fix this.

As time went on, my symptoms got worse and then the fatigue sat in. I don’t mean like I was a little tired. I mean eyelids burning, unable to concentrate, couldn’t think straight debilitating fatigue. Determined to not give up, I pushed myself quite literally to the breaking point on many occasions. I come from a long line of very proud women that struggle with admitting when we need help, but I needed help even if I couldn’t find the words to express it.

As a teacher I would pull myself together in the mornings. I would do what I called the old lady shuffle through the house to get both kids and myself ready for the day. My ankles and knees would be so stiff and achy in the mornings that bending them like a normal human being was not possible for at least the first half hour. Then, I would load everyone up and begin my commute. There was a time in my life where I took being able to press the brake pedal for granted. On my bad days, I would dread even the thought of having to exert force on my already painful feet. If I had to sit at a stop sign for any length of time, I would actually hold the brake pedal down with my left foot so my right could get a little relief.

Once at school, it was showtime. I’d paint that smile on and act like the hustle wasn’t phasing me. I was trusted with the care of people’s children and making sure they had the best education possible. This was a responsibility that I never shirked. I needed these parents to trust that I was giving their children everything they needed and I needed the students to trust me to lead them. In order to make this happen I would push through the pain the entire day. I would sit in the floor with the kiddo that was mad at the world and also couldn’t find the words. Celebrate with a victory dance when a student finally mastered the concept that had been taunting them and welcome all of the hugs.

By the time I would get home in the evening the exhaustion was in full effect. I would come home and crash on the couch doing my best to stay awake to give my children the same attention, but I wasn’t able to. I would fall asleep beside my children doing homework as I curled up praying the pain away. My own children would ask for my help, but the “brainfog” was a huge barrier when trying to concentrate. I felt like I was failing them. Last school year my husband and I could both see that I was not going to be able to sustain this pace.

Those tears that were once happy tears for an answer finally, had now become tears of anger, fear, pain and resentment of what PsA was taking from me. The countless prednisone tapers, NSAID’s, prescriptions, shots, and pills hadn’t helped yet and it was time to make a decision. My decision was to take what energy I have and use it towards finding the right treatment for me. My decision was to take this time to listen to my body and not the outside world that tells me “I look fine,” or “it’s not that bad.” My decision is to stand in the reality of what is and to tell the truth. I am not too young for PsA and PsA sucks!

I’m writing this today because I promised to be authentic. I do not want pity. I would love those of you who read this to maybe learn something new. Maybe in me sharing this, one of you may realize that we all struggle. Our struggles don’t always look the same, but you are not alone in what ever battle you may be facing.