“This is my Aunt Janet and she’s divorced,” my niece Stevie shared as I attempted to sit down at her first grade school dinner. Red with embarrassment, I then looked down in horror at the children’s table we were expected to sit at which was about a foot off the ground. My knees groaned, snapped and popped as I dropped down into my tiny chair. Gamely, I looked up into the eyes of a beautiful southern lady who introduced herself as Amy who was also divorced. Laughing, I mentioned in addition to a failed marriage, I had rheumatoid arthritis (RA) and that it was doubtful I was ever getting out of the chair without help. Being prepared for awkward situations related to losses, functions and abilities due to RA, it came as a somewhat humorous experience to realize I am just a regular person with shared experiences after all. RA doesn’t have to define us.
Yep, turns out today is just another day after all. For some reason, I had been really looking forward to my birthday this year. It has been a challenging year with lots of drama and pain. So, I kind of fixed my eyes upon that one day for some fun healing time.
Over the past 30+ years I thought I had grown a thick skin when it comes to hurtful words, disappointments and judgments. But I think many of us in chronic pain will always be too thin-skinned, allowing others to compromise our confidence and joy. We know what we are supposed to do. It is all within our control to believe what others say or to reject their unkind words, but invariably we give in to the hurts; or at least, I do.
On this, my birthday morning, I want to scream as the tears flood my eyes. Poor Frankie (Boston Terrier) is at a loss as to what to do, frantically licking away the constant stream down my cheeks. (Given the prednisone; my ample cheeks allow for more of a river of tears in the deep valleys near my nose.) Since I retired from the National Institutes of Health, I have felt a calling to try and bring joy, comfort and hope to people in pain from chronic diseases. Chronic pain from these diseases is greatly misunderstood by health professionals, law enforcement, and the general public.
Chronic diseases, like rheumatoid arthritis (RA), lupus, scleroderma and many other rheumatic diseases are systemic in nature. This means along with significant pain, stiffness, and fatigue, there is a component that can affect the internal organs and systems. The medications are powerful, all with possible side effects. In the case of rheumatoid arthritis, the disease can “cripple” the joints resulting in misalignment and loss of function. Potentially all the joints in the body can be affected. New medications in the case of RA called biologics are showing astonishing results: joint “deformities” may well go to the wayside and medication-induced remission become commonplace.
Taking calls at the Arthritis Foundation, I learned that the general public often views arthritis as basically 2 kinds – the kind everyone gets when they grow older and the “crippling” kind (meaning RA). Our grandparents with RA survived on heavy doses of aspirin and later prednisone. Most patients with RA used wheelchairs to get around and many rarely left the house. There was no Americans with Disabilities Act to help prevent discrimination against individuals with disabilities in areas of employment, transportation, and access to public facilities.
I think of my generation as the pioneers: medications became more effective, helping with the pain and delaying the joint impairments but still resulting in young adults with RA forced to cope with the hidden impairments as they are today… “You’re too young to have arthritis” and “you don’t look disabled to me” as wheelchairs became used less and less. Chronic means for a lifetime– and over the years joints tend to be replaced and, in some cases, replaced again, dozens of surgeries. Yes, thankfully, most individuals with long-standing RA are still up and about but this comes with a tremendous cost. Pain is constant, the intensity varying, not just day to day, but at times hour to hour. How do you help others understand the unpredictable nature of constant pain without sounding pitiful or arrogant?
Fortunately the field of rheumatology has grown from a significant investment in research by the National Institutes of Health and the Arthritis Foundation. Our understanding of rheumatic diseases has and continues to increase. Patient outcomes now are dramatic when compared to pre- 1970-80. Patients are stronger, leading more productive lives. And yet the hidden aspects (pain, fatigue, psychological) of chronic diseases continue to lead to misunderstanding and cruelty by the general public, friends, and family. There is pain that one must work through and there is pain warning you to stop before you do permanent damage to a joint. People with RA are gritting their teeth working through the pain most every day, so give them credit for a significant effort. Then there is “beyond pain” when trying to work through it only adds to the damage. At this time resting (if you can even call it that) must not be viewed as laziness or giving up.
Don’t get me wrong, life is what we make it. We in constant pain understand that well but even the strongest have moments of doubt and helplessness. When you need to give in, I say, do so with passion, let it out, get through it. But never give up, for you are loved, you are here for a purpose, and you are never alone. If you find your birthday fraught with pain or simply just another day, have your pity party, eat some chocolate cake, then pick yourself up and reach out. Blow up a balloon, walk outside and let it go. Feel the tension and frustration expelled from your body. Today isn’t just another day – this is the day you came into the world. Wipe those tears from your eyes and just do the next thing. It is your choice. Let’s celebrate! Somebody toss me a piece of cake…