The Number of Things I Can Do Without Pain

Explaining what it is like to live with psoriatic arthritis to friends and family has never been easy. I have spent hours sharing all of my symptoms and how they cause a chain reaction with the rest of my body. Sometimes I focused only on the pains that were currently at their worst or just simply stated that I was always in pain. Unfortunately, none of these tactics worked. Ninety-nine percent of the people I spoke with were certain there was something that I could do that didn’t cause my body to experience physical pain or they assumed that I experienced pleasure from the same things they did. And they were wrong! The number of things I can do without pain is ZERO!

Experiencing pain with every movement

I experience pain with every movement my body makes. I haven’t been able to sit or stand without experiencing some level of physical pain for 17 years. It doesn’t matter how soft or plush a chair is or what type of shoes I wear. A simple task like brushing my hair hurts my hands and head. Every step I take and some days even every breath I take causes pain. Sleeping is also painful as my muscles either spasm or stiffen. Standing in the grocery checkout line increases my pain. While certain exercises or stretches may reduce my pain level for the moment, I am punished with a more intense level of pain afterwards. While always welcome, even the gentlest of hugs causes pain. In fact, all physical contact causes pain including sex. Holding my children or simply changing their diapers was painful. There is absolutely nothing I can do without pain.

I am not sharing this for pity. My purpose for sharing this is to help others like me find ways to explain to their friends and family what it is like to live with a painful chronic disease. Explaining how the activities that bring them pleasure often feels like torture to us helps them understand our daily battle.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (4)
  • FullBlownPSA
    7 months ago

    Most people are unable to understand and appreciate how the pain, stiffness, fatigue, etc. is affecting you. If they can’t understand or appreciate the disease, they can’t or won’t support you. You are better off just spending your time and energy taking care of yourself. Take those hot showers and epsom salt baths, watch your diet, get and use exercise bands, and get a good Rheumatologist. When you are doing moderately well, let your dad know you are well enough for a short visit. You can give him a copy of PSA magazine to read or have some copies around where he can read about all of these people who are affected by this—it’s not just you!!!

  • victoriafinney
    8 months ago

    I really want my dad to understand how this disease affects me. He simply doesn’t though. He is barely aware of what I am getting up to in my life. I tried dropping a hint that it would be nice if he took me out for a drive as I have been stuck indoors for two months and I am going crazy. He was too busy with my perfectly able attention seeking lying sponge of a brother. It’s impossible to get people to comprehend how bad it actually is, and because of that it is incredibly hard to get help. Invisible illnesses suck!

  • CathyD moderator
    8 months ago

    Hey @victoriafinney, thanks so much for sharing with us all. I’m sorry that you don’t have understanding from your dad 🙁 It can be an incredible challenge to get others to understand what we are going through. I hope you will stop by here anytime you need to connect with others who get it – you’re not alone in this. I saw in one of your other comments that you’re in the UK – me too!! 🙂 -Catherine, Community Moderator

  • FullBlownPSA
    7 months ago

    Cathy,

    People are generally clueless about this disease/chronic medical condition.
    They do not get it unless they have a similiar condition like RA, SLE, or helped someone through those.
    Having multiple joints and TMJ involvement (finally had the surgery, PTx, etc. for TMJ involvement in 2017) after being misdiagnosed by several doctors over several years, I have come to the conclusion that you are better off just dealing with it with your caregivers and therapists as other’s lack of understanding and help just adds to your stress which triggers or aggravates flares.

  • Poll