This story was told to CreakyJoints by Tien Sydnor-Campbell, MS, CMT, a patient advocate who lives in Pennsylvania. Tien is a medically-retired, body-centered psychotherapist and former bodyworker with more than 25 years of clinical experience. Tien shares how her rheumatoid arthritis (RA) and osteoarthritis led to her becoming an advocate, author, and coach to inspire others and bring out the best in anyone living with chronic conditions.
When I was in the seventh grade, I went out for basketball, but my knees blew up and I had to stop. Then I tried volleyball, but my knees couldn’t take it.
At 19, the doctor told me I had osteoarthritis — that my knees looked like those of a 60-year-old.
“Sorry to see that,” he said. The doctor said to stick with swimming and biking and not to do anything too jarring on my knees.
When I worked as a YMCA program manager in my 20s, I swam regularly and started learning massage therapy, which meant receiving massages as I learned. When I made the career shift into mental health, I stopped going to the Y. Stopping the massages and swimming made my body hurt badly.
Training for a Triathlon
I had a goal to complete a triathlon, so at 39 years old, I started training for it. My knees hurt badly — I couldn’t stand — but the pain then went away. It felt like what we call a flare now. I used topical gels, holistically treating myself, but there were times when I couldn’t even open my jaw. I couldn’t chew. Then it went away.
As I approached the date of the triathlon, my wrists were so painful that I wrapped ice around both wrists as I trained on the bike. I was so determined to do that triathlon that I biked with ice wrapped around both wrists. I had to do a walk-jog for the running part, but I did it.
After the triathlon, I felt the pain tenfold as I taught a CPR class using my wrists, attended a rowing class, and played softball with co-workers. I couldn’t hold the softball bat. My wrists had ice wrapped around them for two days straight.
I finally went to the hospital hoping for relief. “You’re young and vibrant, it’s probably tendonitis,” they said. They gave me a cortisone shot in my wrist and the pain went away almost immediately. The power of inflammation.
The Breaking Point
Two weeks later, I went to the doctor, but by then pain was all over in different joints — jumping from wrist to wrist, to one knee to the other, down to my feet and up to my chest.
I couldn’t sit. I couldn’t work.
The pain shifted and was sharp and painful. My experience as a massage therapist and the knowledge I had about the mind-body connection gave me an inkling it was rheumatoid arthritis (RA). Finally, I was referred to a rheumatologist.
A New Job, A New Diagnosis
Just as I started a new job working at children’s mental health services, I went to a new doctor who ran bloodwork. The nurse told me that my hemoglobin was at 4. She wondered how I was walking around with that low hemoglobin level. They said I needed a blood transfusion immediately; I stayed in the hospital for a few days to get two blood transfusions.
I’ve had chronic low iron anemia since I was a teenager. I was on iron supplements throughout both pregnancies, but it had never been that low. Since I had the transfusions, I haven’t had a hint of anemia. It is common for individuals with RA to have anemia; it’s estimated that 33 to 60 percent of people with rheumatoid arthritis also have mild anemia.
A rheumatologist diagnosed me with rheumatoid arthritis based on my symptoms and blood work. I shifted to different rheumatologists over the years, until landing with a great one who recommended a pain specialist who has helped me find better ways to address my pain.
The diagnosis changed my goals.
It redirected me. I managed a pain meditation and addiction group where we used mindfulness and meditation to help with addiction, and I saw people graduating from my group not craving methadone. The mind-body work I did sparked change with many people, especially methadone users at the clinic where I worked. I felt satisfaction seeing people change positively.
Facing Medical Retirement
I was juggling three therapy jobs: two part-time and one full-time. I had to stop two of the jobs because it was too painful to walk and the fatigue was killing me.
When I was at work, I was too fatigued and falling asleep on clients. I knew I couldn’t keep it up. Initially I wanted short-term disability, but everything kept getting worse. Going back to work shifted farther away. By the time I had my knees replaced, I hadn’t worked in three years, and we were still trying to get the right RA med regiment.
One of my greatest accomplishments is completing my book on the day I turned 50. My book titled, It’s Healing Time for the BodyMind of Black Womxn: How to Live a Life You Love and Love the Life You Live, is for managing life with disabilities and chronic conditions.
I’m in awe seeing my book is still in circulation and knowing people are impacted by it. I feel good about what I’ve done, and I feel like there’s also more to do. I probably wouldn’t have started writing if I had not gotten diagnosed with RA.
Even though I was always into wellness, my focus was in helping people who were able to be well. It was centered around people who could access wellness and not centered around people who could not access wellness because of reasons like chronic pain, chronic mental health issues, or chronic illness. That prompted me to make the book affordable so it could help more people and continue to be used as a continuous guide.
Recently, a pain management group asked me to offer mind-body sessions. Once a month, I’m planning to do workshops at a company and do individual counselling with staff based on appointments. I’m being careful not to overextend myself while I do the work I love to do.
Surround yourself with a supportive community.
When I think about my advocacy work, I’m appreciative of all the friendships I’ve made — all my sister girls who understand me. I can’t tell you to imagine a bad thumb day if you don’t have one yourself.
Know what you need to tell your doctor and nurses.
These are some questions to consider before and during an appointment.
- Which pain medications work well for you?
- Do you need refills?
- Is the medication working to your satisfaction?
- Is the medical team answering your questions?
Tell the doctors and nurses what doesn’t work, too.
I know which pain medications do and don’t work for my pain; I’m not shy about telling the medical team this so I can get relief faster. The lesson for me in seeking medical care is really being aware of exactly what it is that you need and telling them everything that does not work. When I’ve gone into the hospital, I’ve told them: Don’t give me oxycontin, it makes me sick and high but does nothing for the pain.
Stick with your gut and listen to your body.
Even though I knew I couldn’t keep working while experiencing so much pain and fatigue, a doctor told me I should keep working. He said he was afraid I wouldn’t go back into the workforce. Ironically, that same doctor got psoriatic arthritis years later and stopped working six months later. It seems to me that some people just don’t really relate to chronic pain, until they go through it themselves. I listened to my body and did what was best for me.
Talk to the pain — and make friends with your pain.
On this journey, I’ve learned how critical it is to listen to my body and give myself grace. Through meditation, I learned to talk to the pain and get through a particularly tough moment.
Just like grief, it’s a lifelong companion. Throughout this journey, you’ll be in pain. You’ll have to make friends with the pain. The quicker you make friends with it, the easier it will be to stop worrying about the things you can’t do, people you can’t hang out with.
It will get easier when you’ve accepted it as a fact. Say thank you to your body for alerting you for the difficulty walking today. Your body is not betraying you the way you think it is, it’s only sending signals. It’s alerting you to something.
Fight for what you need.
Multiple doctors told me I was too young for a knee replacement. I continued to explain that my fibula was popping in a way it should not, but no one listened. It wasn’t until a medical student came along and looked at my knee with fresh eyes. She could see that my fibula was indeed popping out — and that exam finally led to my knee replacement. I still find myself having to push for tests and treatment for ongoing wrist and knee problems.
Strategies for Advocating for Yourself
Get educated, get specific.
You might need to go back to your biology book from HS and pinpoint what joint, what muscle is involved. Get informed about your body and its processes.
Keep a file on yourself.
You know doctors have a file on you; have a file on yourself. Keep a log of what has worked and hasn’t worked. If not, history is bound to repeat itself as trial and error continues. If you don’t know your medical history, get a binder or notebook with your medical history in it, so it can be an advocate for you if you can’t talk. Put it on your phone or have it in a book. Take it with you to appointments.
Know that “fail first” includes all of your treatments.
Don’t just stop taking the pills because you feel like they are not working. Sometimes insurance requires a patient to “fail first” before switching medications, so try to stick with it if you can so you can prove you failed it.
When you fly off the handle and yell, the doctors and nurses stop listening to you. Having patience is key.
Be your own best advocate.
As far as medical treatment goes, trust yourself and your gut. It might mean you go to different doctors until someone listens to you.
If I Could Change One Thing
One of the things that has bothered me in the last several years is the exposure of the medical community in how Black women are treated in the emergency room and under doctors’ care. Like that female physician who died because she was telling the doctor what was going on and he was dismissing her and she died. If a doctor is going to be able to tell you what’s wrong and you’re not listening, what are we left with?
It makes me mad at the medical community.
It seems like some people don’t care about the people they treat. Black women are three times as likely to die in childbirth than others. I’m reminded of the woman who alerted the nurses that her legs were numb after she gave birth. The nurses said they wouldn’t call the doctors because they’ll get mad. She died. There was no one there to advocate.
Be a More Proactive Patient with ArthritisPower
ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.