Gathering support, she remains resilient in the face of pain.
Shannon Young has been living with rheumatoid arthritis/rheumatoid disease (RA/RD) for five years. A mom to two grown daughters who loves her job as a secondary school principal, she will not let the disease get her down. She knows she can use her experiences for the good of others, and is dedicated to giving this disease a voice.
Shannon had just turned 41 when she underwent a radical hysterectomy. While recovering, she began experiencing extensive pain and stiffness in her hands. Soon her feet and other joints bothered her too. Her primary care doctor wanted to do blood work to screen for RA/RD, but Shannon declined. All the research she had done indicated joint pain with the onset of menopause. She believed it was more pronounced in her case since having surgery.
Unfortunately, the pain did not go away. When walking was difficult and she could not cover herself with a sheet in the middle of the night because her hands hurt so much, Shannon agreed to testing—and she tested high positive in all categories. Not only did she have RA/RD, but she had an aggressive form of it.
High Positive in All Categories
Shannon’s heart sank. She had already been doing research, and knew the most likely medication to treat this disease may not work. With no idea what the future held for her, she was terrified.
Shannon’s doctor prescribed high-dose steroids and referred her to a rheumatologist—who recommended an aggressive treatment plan. She started on methotrexate injections, continued on a prednisone bridge, and began Remicade (infliximab) infusions.
Because Shannon builds antibodies quickly, she responds quickly to drugs but they stop working just as quickly. She has been on disease-modifying anti-rheumatic drug therapy (DMARD), biologics, Janus kinase (JAK) inhibitors, steroids, and non-steroidal anti-inflammatory drugs (NSAIDs). Her list of options is running out—sadly common for high level rheumatoid factor patients—and her current medication has been less effective lately.
“RA is a vile, beastly disease,” says Shannon.
I knew very little about it before I was diagnosed. Now I know all too well that it is a systemic autoimmune disease that causes my immune system to attack specific types of tissue found in my joints, lungs, and heart. It is not as the commercials portray.
Statistics show individuals with aggressive cases of RA/RD like Shannon are disabled within 10 years. She has been fighting the disease for five.
“To have gone through so many of the current treatments in a relatively short amount of time is difficult and terrifying,” she says. “I am 46 years old with almost nothing left to try. I don’t want to be disabled. I don’t want to lose my job.”
She is hopeful for new medical advancements, including stem cell and bone marrow transplants, both of which are currently in trials. While it scares her to enter a study that could wipe out her entire immune system, it is something to consider.
Her Life: Impacted in Many Ways
Since being diagnosed with RA, Shannon can’t predict what a day will be like or what challenges she may have to overcome. Driving long distances has become difficult. Shaking hands with people terrifies her; instead, she reaches for their wrist, which is always awkward.
“Oh, and I really miss cute shoes,” says Shannon. “I have narrow feet so I used to be able to wear anything; now, they have to be supportive, fit my insoles, and be wide enough at the toe base to accommodate swelling.”
Her fitness has also been impacted. Shannon used to go from couch to 5k without much effort. Now, just functioning on a day-to-day basis to get through work and regular life exhausts her. It is a struggle to exercise beyond some walks with her husband and dogs.
Shannon relies on compression gloves for pain and swelling relief. To avoid panic over not having them when she absolutely needs them, she stashes pairs in all her bags and keeps extras at work and in the car. Traveling requires boosting her steroid to handle the extra activity, and ensuring she has all the medication she needs plus additional doses in case of delays. (She learned this the hard way after severe weather cancelled a trip and she did not have enough medication.)
Shannon misses bowling, which she used to do weekly with friends. She tried attending just to be with them, but eventually stopped because it was too hard to be reminded of what she could no longer do. “I’m sure it’s tough for others to fully understand,” she says.
She says the extreme physical and mental energy needed to just navigate through the day is staggering. “Being a mom to daughters, it crushed me to tell them I couldn’t always braid their hair,” she shares. “The shower is a good place to cry and let it out. You are already wet and tend to come out with a red face from the hot water!”
Learning to Ask for Help
Shannon has learned adaptive strategies. She knows sitting for long stretches causes her to limp when she stands up, so she stands in one spot for a minute until she feels capable of moving without drawing unwanted attention. She also rations her energy for the task at hand.
She struggles to ask for help. Not wanting RA/RD to define her, Shannon hides her pain as much as possible from others.
“I don’t want to appear weak or as a complainer,” she says. Asking her daughters to blow dry her hair and needing help cleaning her house are tough moments. But realizing people want to help has made it slightly easier for her to be honest about how she is doing.
“I see how hard this is on those that know me,” says Shannon. “It hurts them to see me suffer, and helping in some way allows them to not feel as helpless, and it gives them another way to show me they care.” It is still not easy for her, but she is extremely grateful for the help.
Shannon recently had to leave work during the school day because of pain, for the first time.
“That was an awful day,” she shares. “For five years, I had prided myself on working through the pain, and when I couldn’t, I felt defeated.” Thankfully, she has a great support system of people who showed her this was OK. She received multiple texts and calls. Her dear friend and coworker even brought her flowers and a present to signify the huge stride she took in making her health a priority that day.
Misconceptions and Misunderstanding Don’t Help
Shannon says she has learned a great deal about herself through the recent years, most importantly that none of us know what is truly happening behind closed doors. “Too many diseases are invisible,” she says. “Don’t make assumptions based on visible appearance.” Shannon also treasures the good times more, seeing them as gifts, and understands she is strong.
She pursues non-pharmacological treatment options as well, including massages every three weeks, and walks as much as she can. She eats healthy and makes sleep a priority. While pain impacts her ability to sleep soundly, rest is critical for her to mentally handle the days. Her sleep ritual includes warm socks, soft music (Enya), a cup of tea, and one pain medication. She even tries to sleep in one day every weekend.
“Arthritis, as horrible as it is on its own, is only one symptom of this disease,” says Shannon.
This is a systemic disease that requires forms of chemotherapy to address it. Remission means medication has toned down your body’s response. And in addition, remission typically only remains while on drugs.
A common misconception is that patients can be “cured” by taking a certain medication, eating a specific type of food, or following some spiritual practice. But that is not the case. As many people as there are living with the disease, that’s how many different experiences there are treating it. Additionally, Shannon takes issue with articles suggesting people with RA/RD are to blame: “My reality is that I could eat all the cherries, pineapple, etc., in the world, and it is not going to ‘cure’ this disease.”
In her opinion, television commercials have added to societal misunderstanding. While Shannon sees the benefit in making people aware of early symptoms (early treatment is key!), she also believes they limit understanding of the scope of the disease.
Advice for New Patients
Her advice to the recently diagnosed is to “get enough rest, don’t give up, find sources of help and inspiration, and do your homework. Read from reputable sites like the Mayo Clinic or RA Warrior. Know you are not alone.”
Blessed with an incredible community of support in her family, friends and coworkers, Shannon continues to find meaning in her life. Her daughters, husband, friends, and staff are very supportive. (Her school even hosted an RA/RD awareness day!)
“One Christmas, my daughter gave me spoon earrings, in reference to ‘The Spoon Theory’ by Christine Miserandino of ButYouDontLookSick.com. It was one of the most thoughtful presents I ever received. Without saying anything, I knew she understood,” shares Shannon.
Today, Shannon is managing her symptoms the only way she knows how: with courage, optimism and resilience. “I’ve learned to try to see where I can be a blessing to others since so many people have been a blessing to me along this journey.”