For many patients with an autoimmune disease, including myself, finding the right answers to our issues is all about “the journey.” My journey began in my mid- 30s, when I began having daily, persistent joint pain. I went to a number of physicians and chiropractors to find relief and to try to get some answers. The relief was often temporary. The answers typically only led to more question marks. The general consensus was that I had osteoarthritis, but because I was so young at the time and there was substantial inflammation and fluid buildup, most providers I saw were puzzled.
By my early-40s, I had had fluid from my knees drained a handful of times and eventually required a left knee replacement. Not exactly the way anyone pictures their life at such a young age.
I have spent all of my adulthood working in healthcare settings, so I know that medicine is not black and white. I’ve seen many patients coming back to the office month after month, working with the healthcare team to find answers to their issues only to be frustrated at every turn. Knowing that I was in the same boat as many of these faces didn’t necessarily make things easier; it just made me understand that I wasn’t alone.
My healthcare journey began its most recent evolution approximately 5 years ago when I was hired as a practice manager for a rheumatology office as I neared my 50th birthday. About a month after I began, one of the rheumatologists in the office noticed that I walked with a limp. She stopped me and asked me why I walked like that? I explained to her that regular pain in my right knee (the one that was not replaced) as well as my hips and back forced me to limp uncomfortably most of the day. She proceeded to ask me to make an appointment with her to see if she could help. I was skeptical. I had been programmed by so many doctors that what I was experiencing was different from what “typical” rheumatoid patients endured. I didn’t think there would be anything different this time around. Nonetheless, to appease her, I made the appointment. By this time in my journey, having tried so many different things and gotten opinions from so many different “expert” voices, I was doubtful that anyone would be able to figure out an answer to my individual issues. At this appointment, I was run through a battery of tests. I was asked the same questions I had been asked dozens of times over the last 20 years—personal history, family history, medical history, etc.
I got a joint X-ray as well. The result? Inconclusive, although suggestive of an inflammatory arthritis (I would eventually be diagnosed with psoriatic arthritis, but that came later). I was neither impressed nor encouraged with this latest workup and conclusion, but I agreed to a trial of hydroxychloroquine. Much to my surprise and relief, I began noticing a slight improvement in my daily pain after a few weeks. The addition of methotrexate (MTX)—first oral and then injectable—brought further relief. I was now able to walk further, and my knee didn’t swell as often as it had previously. I was feeling good—or at least better—and yet my provider continued to push for more.
She started me on adalimumab in addition to the hydroxychloroquine and MTX, which made a world of difference. I felt almost normal again, a feeling I had not had in more than 20 years. I could participate in activities around the community and with my family that I had basically given up on, and I didn’t feel as if I was constantly fighting chronic fatigue. I had spunk and energy and just generally felt like a different person.
Not everything, however, was perfect. There continued to be swelling in my right knee, which eventually necessitated a knee replacement to go along with the previous replacement in the contralateral knee. I was warned that I would need to go off of adalimumab prior to the surgery, which made me very nervous. What if something went wrong and I wouldn’t be allowed back on it again? What if I would go back to feeling the way I used to before things started to get better?
My rheumatologist was great in helping to alleviate my concerns, and indeed I was allowed back onto adalimumab following the surgery. Unfortunately, it did not work as well after the medication break, and I began to experience flares in my hands, feet, and back. I was told that this can sometimes happen as antibodies build up to a specific medication. I was then switched to etanercept, which took about a month to work, but when it did, I was back to how I had felt before the latest knee replacement. I felt good enough to join a gym and start working with a personal trainer to strengthen my body and become a healthier person.
Today, as I near my mid-50s, I’m optimistic about my future. Looking back at my 20-plus year journey through the healthcare system, it can be hard to remember how I got through the day being in regular, constant pain. I know that, for a while, I simply accepted that “this is the way my life is supposed to be.” Had I not taken a job in a rheumatology clinic and seen how people could look so very disabled one day and then, 3 months later, walk in without needing a cane or any other support, I don’t know that I would have understood that there may indeed be an answer out there to my issues. I feel as if I cheated myself out of 20 years of my life because I didn’t speak up for myself and continue to press for an answer to my health problems. I did not question how or why I was in so much pain—I just swallowed it as my personal burden. Without the persistence of my provider in finding an answer to why I was in such pain and discomfort, I don’t know that I would ever have sought out the answers I needed.
My mistake was that I too easily took what my healthcare providers and other professionals told me as gospel. I did not know how to search and find answers for myself. I look back with regret at the time I wasted because I did not pursue the help I needed. It’s important for healthcare professionals at every level to value your patients and to truly listen to their complaints instead of just brushing them off as “It’s something you’ll just need to deal with.” There are answers out there if you keep trying and pushing. If one avenue is blocked, turn back around and try again. We need more providers like my rheumatologist who wouldn’t take “good enough” for an answer and kept my spirits up. Every patient is unique and has unique struggles. It’s an important lesson to remember every time you walk into the exam room.
Annette Stevenson currently lives in Firestone, CO. She has worked in healthcare for more than 30 years. She has 2 daughters and 2 grandchildren. Annette married her husband, Bob, in February 2018.