A.S. Face 1946: Becca Richards

I have Ankylosing Spondylitis (AS). I had my first symptoms at 17. I saw my first doctor at 18. I was diagnosed at 35. It was my senior year of high school softball and I was a state-ranked pitcher in excellent physical condition. The lower left side of my back started hurting. It was the worst pain I had ever had. This pain would come and go but would never stay away for more than a few months. I told every doctor. I had lot of x-rays. I went to physical therapy. I tried chiropractic, acupuncture, pain killers, muscle relaxers and stretches. I accepted that this was my body and there was nothing I could do to change that. I stayed active most of the time. I learned that if I walked through the pain that it eventually got better. I figured out how to walk so that I looked normal even when it hurt. I became a master at telling everyone that I was fine, when I wasn’t.

Somewhere in my mid-twenties I began having rib and flank pain. It would come and go. I mentioned it to some trainers at my gym thinking it was muscle soreness from intense workouts. I told every doctor. I told my friends and family. I hoped that someone would know how to make it go away. I felt it with every breath. Like an icepick stuck between my ribs. It knocked the wind out of me with even the slightest wrong move. Getting comfortable in bed and staying asleep is impossible. When my lower back or my ribs hurt I don’t sleep. I am exhausted but wake up constantly because every movement hurts. I finally get tired enough that I sleep through the night, but I wake up with so much pain and stiffness that the sleep almost wasn’t worth it.

I convinced myself that I was just always going to be in pain. I wondered if everyone’s body feels like this as they get older. I thought I was crazy. I thought I was a hypochondriac. I thought I was weak. I thought I was a failure. But I never let it stop me. I got really good at pretending to be okay. I got Oscar-worthy good at pretending to be okay. Some days it took all of my energy to put on this show.

I joined a softball team this past spring. I hadn’t played in a few years and my shoulder started to hurt after a few weeks. I had a physical with my Primary Care Physician a few months later and mentioned this to her along with a whole list of problems that I was having. Presenting her with this list was difficult. I felt crazy. I felt like a hypochondriac. I felt weak. I felt like a failure. She sent me to physical therapy for my shoulder where I met Tammy, the woman who changed everything. During one of my appointments, Tammy heard me gasp while moving my shoulder. When I told her it hurt in my ribs, not my shoulder, she started to investigate. She told me I wasn’t crazy. She told me I wasn’t a hypochondriac, or weak or a failure. She told me that something was happening around my ribs that seemed to be making my shoulder hurt and reported this back to my doctor.

My Primary had ordered blood work at my physical and the results showed inflammation markers so I already had an appointment scheduled with Rheumatology that she was able to move up since my rib and flank pain was off the charts. It didn’t take long for my Rheumatologist to diagnose AS.

This diagnosis was the missing piece to my life. Everything suddenly made sense. I was so thankful to know that I wasn’t a crazy, weak, hypochondriac-failure. Then I got mad. I got mad at all of the doctors who didn’t listen to me. I got mad at all of my friends and family who didn’t seem to believe me. I got mad at myself for not pushing harder for answers. I got mad at myself for thinking I was crazy. I was so mad.

I haven’t told many people. Partly because it is so hard to explain (especially since the name sounds like a dinosaur) and partly because I don’t like people’s reactions. I know I don’t look sick so it is hard to understand that my body is attacking itself. I know that I am young and many of my symptoms are “for old people”. I don’t want pity and I don’t want advice about how your grandma deals with her arthritis or how this or that helped your back ache or how you know exactly how I feel since your back hurt once too. I don’t want to feel compelled to convince people that this disease is a big deal and that I will never be cured and that I will probably get worse no matter how much yoga I do or how healthy I eat, and that if I don’t figure out how to get my inflammation under control that my organs will be damaged. Yes. My Organs. My heart in particular. Oh, and by the way, the only medication that has helped lessen my pain has also destroyed my immune system so I am now tethered to my hand sanitizer and I really don’t want to see you when you’re sick.  I don’t want to feel minimalized and I don’t want to be upset with people because they don’t do what I want them to do so I just don’t talk about it.

Those are my darker truths that I have only said out loud to one person ever. On the bright side, and I am a bright side person, I am living a normal life. I have a family. I have a full time job. I am active. I basically do what I want. I make some minor accommodations for my body but nothing that takes away from my quality of life or greatly disrupts my family. I am not letting this disease stop me. Most of the time it doesn’t even slow me down.

I am still getting to know who I am with this disease but I know that I eventually I will be an advocate and an educator. I don’t want AS to be unknown. I don’t want people living with chronic pain to feel alone and judged. I have always tried to live my life in a way that is kind and compassionate to others. I hope that by telling my honest story people will realize how deceiving appearances can be. I hope that those who read this will judge less and realize that everyone has a story that they don’t tell. Be kind.

Minnesota, United States of America

5 Responses to “A.S. Face 1946: Becca Richards”

  1. Dear Becca,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Love you to the Moon, Becca my love.

  3. Becca, To me you are one top notch person. Strong as hell. Nice as nice can be. a fabulous Mother and friend. Love you lots. Thank you for sharing you thoughts.

  4. Wonderful post Becca, thank you for your honesty.

  5. I sure can relate to all of what you said. The anger, the fear, the disappointment. AS is a an invisible monster that sadly doesn’t just disappear when we turn the lights back on.

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