How We Look May Be Different Than How We Feel

Yesterday’s post was titled 115/36/44.  These numbers were used to share my weight when I was diagnosed with rheumatoid arthritis, my age when I was diagnosed, and my current age.  Bloggers used these numbers yesterday to hopefully dispel the common misconception that AUTOIMMUNE arthritisRheumatoid Arthritis (RA), Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS), Sjogren’s Syndrome (SS), Systemic Lupus Erythematosis (SLE), Still’s Disease, Juvenile Arthritis (JA), Mixed and Undifferentiated Connective Tissue Diseases (MCTD/UCTD) is brought on by being overweight or elderly.   As you can see from my weight, I was not overweight when I was diagnosed.  In fact, I felt very frustrated when I was first diagnosed because everything I read mentioned eating a healthy standard American diet of whole grains which I was doing at the time, losing weight (I didn’t need to lose weight), and exercising more.  I was already working out 4-5 times a week plus I was the mother of two young kids and working part-time.   How much more exercise did I need?  I also wasn’t elderly.  At 36, I felt vibrant and alive.  

Rheumatoid Arthritis is often misunderstood even by those who are close to us.  How can we look fine and still have a disease?  How can we continue with everyday life and really be in as much pain as we say we are?  Rheumatoid arthritis and other types of autoimmune arthritis are a challenge even for those of us who live with it. The intensity of our symptoms vary from day to day and sometimes even from hour to hour.  Sometimes we feel completely like our old selves and other days like we have aged 30-40 years overnight.  It makes planning and living your life a challenge because you never know what the day will hold for you.  An example of this was yesterday.  I woke up and worked out with my husband.  I then took a two mile walk with my border collie.  I felt great.  By the time I made it to my first teaching job of the day at 9:00am, my feet were on fire.  Walking felt like I had rocks under my feet and when I stood still at the board, the pain shot right through every part of my feet.  By the time I made it to my second teaching gig that evening, my legs felt like they had added 20 pounds to them.  It was difficult to stand for long periods.  Did anyone know?  Of course not.  I mentioned it to my husband, but that was it.  Rather than whining about it, I prefer to release the pain  as much as possible through laughter. I laugh as much as I can.  It is amazing how much laughter quiets the mind of the pain you are experiencing.   
We each have things going on in our lives – stress at work, divorce, health, money, etc, etc.  Although it is frustrating for me when friends obviously have no idea what rheumatoid arthritis is even after seeing me go through some of my worst flares, I don’t feel upset with them.  I know that unless you are dealing with a certain situation yourself, it is difficult to understand what it is really like to go through it.    My daughter recently shared a wonderful message that she herself learned at camp and that I am trying to incorporate into my own life more.  She said, “I need to be nicer to people because they might look like everything is fine, but then you find out there is a lot more going on inside.”  I think if we could each incorporate this wonderful lesson into our lives, we wouldn’t need to have World Arthritis Day or any other day of awareness because it wouldn’t matter what is going on in the lives of those around us if we were all a little more patient and understanding with what might be going on with people that doesn’t always show on the outside.    

6 thoughts on “How We Look May Be Different Than How We Feel

  1. I so agree with this post! I agree with it all and I also love to try and laugh my pain away daily. And like you I was in great shape when I was diagnosed with my ra. Too often I hear ra patients are still suffering terribly with ra as the meds have not been the reprieve they so desperately seek and then to be blamed by doctors for having extra weight on. As if they don't want to run with their children, walk with their friends or swim for the joy of swimming. They aren't moving because they are in excruciating pain. It is a shame we don't have a cure yet. But not all patients find relief with the current meds out there or even with trying alternate methods. I hope every single day I am on this earth that I will hear…There is a cure for ra! And a cure for so many other autoimmune illnesses. I will never give up that hope. Never!


  2. Great post, Kathy. I've come to believe that not one of us who has RA really show others how much pain we're in. And when I think about how awful, and how exhausting, that pain can be even when it's “just” a 5 on the 1-10 pain scale, I wonder how in the world we can do it so convincingly.

    Then, I wonder WHY.

    It bears more thinking about.

    I hope your feet are feeling better today.


  3. This is such an important thing to remember. I always try to keep in mind that the people I meet could have any number of things going on in their lives, just like I've got things going on that they know nothing about. If we could all remember this, I think we'd be gentler with each other.


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