New Arthritis Diagnosis: Who to Tell 

By Jennifer Cuthbertson

An arthritis diagnosis gives you plenty to do and think about: Learning about the disease, setting up a treatment plan, getting started on new medications and possibly making some lifestyle changes. On top of all these important steps, there is yet another to-do you should add to the list – sharing your diagnosis with others. Explaining a complicated diagnosis and knowing who to share it with first can be tricky. These tips can help you get started.

Determining who to tell and how to tell them may be overwhelming. After all, you’re just getting used to the diagnosis yourself and still processing all the information. But that’s one good reason to let the people who are closest to you in on the diagnosis.

“It’s a good idea to start a conversation with family members and friends – not to get medical advice, but because those who care about you will want to know what you’re experiencing. And it’s an important first step in building your support system,” says Robert Katz, MD, a rheumatologist at Rush University Medical Center in Chicago.

In addition to offering support, your partner or significant other, your family and your friends can provide much needed assistance as you get used to treating and living with your arthritis.

As you are quickly learning, arthritis is complicated. There are so many different types with different short- and long-term effects.

But explaining what it means to have arthritis isn’t easy and can cause you to become emotional. Planning what you are going to say in advance can help curb some of the anxiety. Before you tell others, prepare a short, easy-to-understand, “elevator speech,” or something that would take roughly as long as an elevator ride to explain. This may include sharing a few facts, including the type of arthritis you’ve been diagnosed with, how it is affecting you and how you’re going to treat it. 

You may also opt to share handouts or brochures to help explain the more complicated parts of your diagnosis, including treatment options, medication side effects and lifestyle modifications.

What you share will probably vary by audience. Should you decide to tell acquaintances, including co-workers and distant relatives, don’t feel pressured to share more than the basics.

Your closest friends and family, on the other hand, will want to know how you are you feeling and coping with the new diagnosis. This might be the hardest information to share. After all, you are just getting used to it. It’s okay to say, “I was just diagnosed, and I am still learning and trying to process.”

Before starting those conversations, you may want to get a few more tips about what to say.

Telling your current or future employer about your diagnosis is completely up to you – there’s no law requiring you to disclose your arthritis. However, as you think about modifications and changes that need to be made, both at home and at work, you may want to consider disclosing your condition to your employer and colleagues. This is especially true if you believe your new diagnosis could affect your work performance without proper accommodations or require you to take medical leave. The American Disabilities Act (ADA) offers protections for employees with chronic health conditions, including requiring employers who have 15 or more employees to provide reasonable accommodations.

When you are talking with your employer and your co-workers, feel free to keep it simple. Tell them you have arthritis – including the type and let them know their support is important to you.

For the discussion with your boss, there are a few additional things to consider and to discuss with her if appropriate:

• Will you need time off for doctor’s appointments or physical therapy? If so, give your employer a heads up, and let her know how you plan to handle your workload.
• Will you need workplace accommodations now or in the future? There are a lot of things that can be done to help make the workday easier on your joints. Learn more by reading about working when you have arthritis. It might help you prepare.

Get some first-hand advice about sharing your diagnosis. You can also connect with others who have arthritis. Join the Live Yes! Arthritis network today.