I Was a Teenager With Arthritis

How Could That Be Possible?

Carol Eustice
Photo @ Carol Eustice

I was diagnosed with arthritis at age 19. Specifically, the diagnosis was rheumatoid arthritis but that's not what the doctors said at first. There was a period of uncertainty that preceded the final diagnosis.

Must Be a Sports Injury

The first indications that I had a problem appeared rather suddenly. Seemingly overnight, I had knee pain and water-on-the-knee (medically known as joint effusion). After a few days or maybe even a week or so of intense pain, I knew I had to consult with my doctor and I did.

I saw my family doctor who seemed as surprised by my symptoms as I was. I remember he drained the knee and injected the joint with cortisone, 4 times altogether over a period of 8 weeks. But, we didn't seem to be achieving what I thought was the goal -- getting this problem to go away.

Because the pain persisted and the swelling recurred, my family doctor was puzzled. I mean, I was a healthy girl. Never did my doctor see me for anything more than an earache or sore throat. He knew I was athletic in school. I was a basketball guard, volleyballer, and loved to play tennis. As he tried to figure out what was wrong with my knee, I was pummeled with questions that would have been consistent with a sports injury. I recognized the deductive logic. I was healthy and athletic -- and now my knee was hurting. Must be a sports injury, right?

Pursuing that line of thinking, my family doctor referred me to an orthopedic surgeon.

The orthopedic doctor concurred that it was likely a sports injury. You don't always know when you twist your knee or stress the affected joint, especially when you are focused on your game. I had played tennis the week before. It was just one knee bothering me, a clue that was consistent with injury, too.

The doctor told me to take 8 aspirin a day and lift soup cans tied to my ankle to strengthen my leg muscles.

Evidence Shifted Towards Arthritis

At that point, no one had mentioned the possibility of arthritis. Their diagnostic course seemed stalled on my medical history -- young, previously healthy, athletic. Stalled, that is, until there was a significant change in my condition. About 6 months or so after the initial onset of pain and swelling in my right knee, my left hip was suddenly intensely painful, too. It no longer was just one joint and the pain was now affecting both sides of my body. Finally, they ordered x-rays. The radiology report said I had joint damage consistent with arthritis and typical of a person much older than I was.

Even with evidence of arthritis, I remember sticking with the aspirin regimen for some time and then being switched over to Motrin (ibuprofen). But, I wasn't getting better. I was getting worse. This was all happening back in the 1970s. There was no "Google" to look up what I should do next. My family doctor and the orthopedic doctor saw me periodically, but they were short on answers. I was frustrated. My parents were frustrated. Somehow, we found out that there were specialists who treated arthritis and rheumatic diseases.

I searched for a rheumatologist in the phone book and I picked one that was conveniently located. That was one of my biggest mistakes back then. I kept trying to make a very inconvenient medical condition convenient and that led me to make several bad choices.

I saw the "phone book rheumatologist" only once. During the consultation, the rheumatologist told me that within 5 years I would need a hip replacement. Was he kidding me? How could he say something so ludicrous. I told my parents I was not going back to him and I didn't. But 5 years later, almost to the day, I had a hip replacement. At the age of 24!

Who could believe all of this?

Don't Have Time to Be Sick

You will recall, as I seem to keep repeating this point, I was young, healthy, and athletic. I was the girl who was pretty enough and popular enough. The one who got picked second or third in the schoolyard -- never last. Who had time to be sick? Surely, not me.

That, sort of, became my approach to dealing with my condition. I didn't have time for this. I had a life to live. Thankfully, even with that attitude of denial, I still had sense enough to eventually go to the world-renowned teaching hospital that was just 11 miles from home and consult with the best of the best.

The rheumatologist I saw there recommended that I be admitted to the hospital for a course of intravenous medications to dampen down the inflammation and symptoms I had been experiencing. You may not believe this. I'm not sure I believe it. I said no. I had no time to go in the hospital. I had college courses I couldn't miss. What he suggested was inconvenient. There's that word again -- inconvenient. So we did the next best thing and he prescribed methotrexate, an oral disease-modifying anti-rheumatic drug.

From Denial to Doubts to Heaven on Earth

I was determined that arthritis wasn't going to disrupt my life, yet that's exactly what was happening. Subconsciously, I must have known it. Arthritis was becoming "the intruder". The disease dinged my social life. I wasn't going out as much. If I made it back and forth to classes, that was about all I could handle at the time.

Within the first 5 years of being diagnosed with arthritis, my armor of denial began to crumble. My thoughts were shifting, as I realized arthritis was much more than an inconvenience. Maybe it was going to keep getting worse. Maybe it was going to impact my life and plans I had for myself. I started to have questions that you would expect from any twenty-something girl with health issues. A lot of questions. A lot of doubts.

  • Will my friends go away?
  • Who will want to date someone with arthritis?
  • Who will want to marry someone with arthritis?
  • Will I be able to finish my coursework and get my degree?
  • Will I be able to get a job?
  • Will I be able to keep a job?

While not everyone with arthritis has the same experience, I can tell you that I never lost a friend because I had arthritis. My social life was determined by how I was feeling. If I was up to going out, there was always someone ready to go along. I had my fair share of dates, too. I found that people responded to the persona I let them see. In other words, if I was happy, they were happy. If I could deal with my arthritis, they could deal with it, too.

I finished my degree. I got married (twice). I got a job in my chosen profession. At one point, I did have to switch my career because arthritis was making it difficult to work at the job I had. But, I adapted. I made the necessary adjustments. I stopped thinking of arthritis as inconvenient and intrusive. Just between you and me, it is. But I didn't let that become my mantra. Over time, I learned that the best way to deal with arthritis was to take it as it comes. Live your life. Pursue your dreams. To quote William Watson Purkey, author and professor emeritus at the University of North Carolina at Greensboro:

You've gotta dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.

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