Ask the Advocate: Practicing Self-Care with Graves’ Disease

What lifestyle changes have helped you manage Graves’ disease?

One was to learn to say no — to not cram so much in. It took me years to do that because I’m kind of type A, so I’d say, “Yeah, I can do that, I’ll do that, I can squeeze that in.” And it didn’t help to be trying to do so much.

I learned to manage my time a whole lot better.

I learned to make myself go to bed — because I used to be a night person that would study until midnight and then get up at 6:00 to go to work, and I couldn’t do that anymore.

I understood healthy eating, so I didn’t have to make a lot of changes there.

I did gain a lot of weight because I was on so many steroids to try to keep my thyroid eye disease from getting worse. Over the years, I weighed 100 pounds more than I weigh now — and I credit 98 of those pounds to steroids.

I also learned that you need to exercise, but you absolutely don’t need to push it. I’ve talked to a lot of people that are trying to push it, and their heart’s just going, “I can’t do this.”

I learned the hard way not to do that. Exercise, but don’t overdo it.

What are some strategies for managing stress with Graves’ disease?

My master’s degree was in psychology, my PhD was in counseling, and my dissertation was on stress mastery, so that knowledge has helped a lot.

One strategy is to keep doing things that give you peace or joy, because it feels like you’re only able to do the things you have to do, and you hate doing those. So make some time to do the things you like to do.

Learn to relax or meditate. Meditating is not necessarily a spiritual thing — it’s just going within yourself and letting go, and it becomes a learned behavioral response. You learn that if you take a deep breath and blow it out really slow, things calm down about 1 degree. You get more in control, and the stress gets less in control.

I’ve also found journaling helpful. Or if you’re the type that likes to draw, you can doodle or just take crayons and scribble all over a piece of paper.

Do something that physically helps you let out negative energy. Let out some anger.

Psychiatrist Elisabeth Kübler-Ross told me about camps that she would do with people who were going through cancer. She said they had rubber hoses, and they would take a telephone book, and they would beat the #@*& out of it. So, I’ve beaten a few phone books.

Also, learn about the illness and get a doctor that listens, because this is your illness, and you need to become your own advocate. That’s the most important thing: Become an advocate.

What are the benefits of reaching out for social support?

Talking to people that know what you’re going through is good, which is why it’s good to have a support group. It’s good to have their phone numbers, so you can call them up and say, “Susan, can you talk for a few minutes?”

When I got my diagnosis, there was nobody to talk to. Most people had not even heard of Graves’ disease, so people were really isolated.

I asked my surgeon, “Are there any support groups?” He said, “No.” And I said, “There will be.”

Within about a week, I had the National Graves’ Disease Foundation founded.

We had our first support group in Jacksonville, Florida. That’s where I lived. Then we started more support groups in different cities, pretty much all over the country.

We also made an internet page with what we called the forum. People could write a message, and it was monitored. We’d read it, we’d answer it, other people would answer it.

It gave people a place to share with each other what was going on. They’d go, “Wow, you have that too?” It gave them a place to get what they couldn’t get anywhere else, which was support and acknowledgment.

Nancy Hord Patterson, PhD, is the founder of the Graves’ Disease and Thyroid Foundation, formerly known as the National Graves’ Disease Foundation. She’s a nationally certified counselor and clinical specialist in psychiatric/mental health nursing. She lives with Graves’ disease and thyroid eye disease.