Listen Up, Doc! Webinar with SLE Lupus Foundation in NYC!

Wow! What a pleasure to work with the S.L.E. Lupus Foundation in NYC a few weeks ago. I thoroughly enjoyed the webinar I did with their group, and S.L.E's Jessica Rowshandel  did a great job writing up the event. See below from her summary of the webinar, and feel free to click here to listen.

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Learnings from Our Latest Webinar — Living Well Despite Lupus: Listen Up, Doc!

Listen to the one-hour webinar presentation by noted lupus patient and blogger Sara Gorman, author of the book Despite Lupus: Living Well with a Chronic Illness. You’ll feel like you are listening to a good friend.

The focus of Sara’s talk is getting the most out of your doctor appointments. Why? Because she finds that Effective Appointments Equate to Effective Treatment! To best treat such a complex chronic disease, your doctor needs to have a full picture of you — everything from how many hours you worked each day to how you feel after you take every medication. She emphasized the need to truly collaborate with your doctor as a team, to approach each visit almost like a job so you know what you want to learn going in and are satisfied that your questions are answered going out. If you already have this type of strong relationship with your doctor, Sara’s insights can serve as helpful reminders.
Her key pointers for using doctor’s appointments to improve your treatment are:

• Be Open
• Be Honest
• Be Assertive

Sounds simple until it’s you facing the doctor in the examining room. Sara goes through each one to explore why it can be hard to be open, honest and assertive with your doctor and ways you might overcome these obstacles to get the best care.
Why is it hard to be open and honest?
Some of the issues Sara raises include:

• Embarrassed and uncomfortable talking about certain topics like sores, rashes and hair loss — and don’t always want to admit how bad you really feel. Sara gave the perfect example of not telling her doctor about a rash on her bottom because it was embarrassing. When she finally told him weeks later, it turned out to be a blood infection that needed antibiotics! Not telling the doctor prolonged her discomfort, and could have had serious consequences.
• Can’t remember everything — All the symptoms, the medications, the side effects. It’s a lot to remember but every detail could be important. The best way to “remember” is to write it down, and Sara had many easy suggestions for how to record information every day like using a journal, creating a daily tracker by hand or creating a spreadsheet on the computer. Whatever, the format, the benefit is keeping all the information in one place that you can refer to when you are with the doctor.
• Not enough time — Like many, your doctor may seem rushed and overly busy. Showing the doctor your daily tracker saves time by presenting a lot of information in a very condensed quick format. The doctor can ask further questions based on that data.

Why is it hard to be assertive?
Reasons that rang true for many on the call and may for you as well include:

• Intimidated by the “expert” who knows so much about lupus. But asking questions shows that you are interested without challenging the doctor’s knowledge. And faced with your questions, the doctor might consider and reconsider a recommendation.
• Takes too much energy — Playing an active role in your treatment can take a lot of energy, and sometimes more than you have to spare. Sara suggests taking someone with you.
• Uncomfortable with a confrontation — You might be afraid of getting the doctor angry, this person who understands what lupus does more than anyone you know. But if you ignore your need to object, the doctor might miss something important. Sara suggests trying to look at the visit as a collaboration rather than a confrontation, knowing that you do know best when it comes to your own body.
• Don’t want to hear the answer — Sometimes we don’t want to know so don’t want to ask. Sara’s example: she didn’t want to hear that her symptoms seemed to get worse when she worked long hours because that might mean she would have to make a lifestyle change. But talking it through with the doctor helped her resolve the situation in a way she could live with.
• Guilt – You are afraid and ashamed that you haven’t followed doctor’s orders. But thinking you have can lead to a treatment that isn’t right for you because it is based on false assumptions.

Take the time for this webinar — you’ll find yourself nodding and smiling as you recognize yourself in Sara’s descriptions of herself. If you have questions, don’t hesitate to email our Social Worker Jessica Rowshandel, M.S.W. at jrowshandel@lupusny.org. Please allow a week for Jessica to respond.

And click here to find out about how you can get a free calendar to put Sara’s suggestions for tracking your health into action. A Year of Health Planners was created by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) to help people with lupus and other conditions coordinate their care. Lupus LA, the West Coast Division of the S.L.E. Lupus Foundation, was one of four organizations selected to pilot test the dissemination of the health planners.

Here's a link to the S.L.E. Lupus Foundation website, and the one-hour webinar itself.