Recognizing that PsA Wasn’t Just My Problem
I used to think of my chronic conditions solely as my problem and not something that would also affect my family. While they slept, I was the one up all night crying because of uncontrollable pain. They could leave the house whenever they wanted, while pain and fatigue forced me to stay in bed. They could wear whatever they wanted, while I had to replace my entire wardrobe with fabrics and footwear that didn’t aggravate my conditions. They could schedule and attend outings, while my body forced me to cancel 99% of the commitments I made. These are just a few examples of why I felt like having psoriatic arthritis was my problem and not theirs. Yet after a while, I was hit with the realization that just because my husband and children did not have PsA, it didn’t mean that it didn’t create problems in their lives as well.
Days spent napping
Because elevated pain levels would keep me up all night, my days were spent napping or just lying in bed. This meant no trip to the park or zoo for my youngest. For my oldest this resulted in my no longer being able to volunteer at school or chaperone field trips. Although my husband and children were understanding and never made me feel guilty when my body would force me to cancel plans or when they had to attend events without me, it saddened them.
PsA is a family affair
The truth is that PsA changes more than the life of the person with the disease, it truly is a family affair. Thankfully my family realized this before the anger and sadness that was brewing in all of us had a chance to destroy our family. By accepting my condition and the changes it brought about, my family and I were able to say goodbye to the life we used to lead and to embark on a new way of living. It isn’t always easy and it took a while to find our groove, but for the most part we have figured out what works for us. The most important change we made was sharing how we felt and where we placed our anger. Instead of demanding that I attend every outing or event, they shared which were most important to them, understanding that I may or may not be able to attend. Then in return, I took as many precautions as necessary to attempt to attend. Directing our hurt and anger at my disease and not each other made the biggest difference. Understanding that just because my body wasn’t always willing and able to follow through with plans it didn’t mean that I didn’t wish to be there. I am confident in believing that if we hadn’t learned to cope with my condition as a family, I wouldn’t have a family to cope with.
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