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Deb Constien was 13 when she was diagnosed with rheumatoid arthritis, a chronic inflammatory disorder that affects joints and sometimes blood vessels and vital organs.

Despite having the sometimes debilitating condition, for which she takes about 10 medications, Constien graduated from college, got married and with husband Tim had a son, Jacob, now 18.

Constien, 47, is active with the Arthritis Foundation. She is board chair and advocacy chair for the organizations upper Midwest region, based in Madison. She went to Washington, D.C., this month to advocate for people with arthritis. Through Arthritis Introspective, she leads a support group in Madison.

The Sun Prairie resident also volunteers with the groups CreakyJoints, Global Healthy Living Foundation and International Foundation for Autoimmune Arthritis.

How were you diagnosed with rheumatoid arthritis at age 13?

I went in for benign foot surgery, to remove a bunion, as a freshman in high school, and my life changed overnight. My surgery was a trigger (for the rheumatoid arthritis). Its one of the theories, and it fits. Everything swelled up. I got hit with a level of pain I had never experienced before. Everything hurt. My knees blew up like big balloons. I couldnt squat down. My fingers were swollen. My hips hurt.

I had been a very active 13-year-old. I was on the swim team. I played the flute. Most of that came to a crashing halt. My friends would ask me to do things, but I was so fatigued, I often said no. Then they stopped asking. You feel isolated. Nowadays, there are camps, like Camp MASH (Make Arthritis Stop Hurting) in the Wisconsin Dells.

What was it like to raise your son with your condition?

It was hard. I had to be protective of my joints. I had a hard time changing him. I couldnt pull a onesie off of him. My shoulders wouldnt allow that. I had to lay him down and wrestle with him. We tried for a second child, which meant being off most of my medications. But I wasnt very healthy. My rheumatologist said I needed to go back on my meds. He said I wasnt healthy enough to get pregnant again. We thought we might adopt a second child. But as my disease progressed, the thought of that became overwhelming.

What activities are difficult and what activities can you do?

I never run. I dont do stairs if I dont have to. Sometimes its hard to sleep. Its my shoulders, my hips. Im constantly rotating and trying to find comfortable positions. I garden, but my husband helps me maintain my garden. He does the tilling and a lot of the weeding. With housework, I do it until I reach my wall and Im done. My husband will finish the laundry and put everything away. I love to cook. I plan ahead and make double when Im feeling good, and I keep emergency meals in the freezer for the bad times.

What do people misunderstand most about arthritis?

They think its only an old persons disease. Its an invisible disease. When you look at me, you wouldnt guess that I have severe arthritis until you look at my hands. Growing up, I liked that. Now, some people try to offer advice. They say I just need to exercise more or get more fresh air. It gets frustrating.

What did you do in Washington, D.C., this month?

I went with two other people, from La Crosse and Milwaukee. We met with staff of both Wisconsin senators and our three representatives. We had three asks from the Arthritis Foundation: to join our caucus and become more educated about arthritis; to support a bill that would dedicate $20 million from the Department of Defense for arthritis research; and to protect several pieces of the Affordable Care Act.

Interview by David Wahlberg

Read more here:
Know Your Madisonian: Advocate seeks to help others with arthritis - Madison.com

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