The simplest tasks can become impossible because of rheumatic diseases.
Now more than ever, the pursuit of health literacy is vital. In the middle of this pandemic, we have to work together to protect the most vulnerable among us.
It is important to emphasize practices such as physical distancing for immunosuppressed patients because they are a high-risk population. Family and friends can play a huge role by being informed and enforcing those practices while having a plan and feeling comfortable about how and when to tell your loved ones about your disease goes a long way.
First, identify the loved ones you want to educate about your condition and disease. When it feels appropriate, include close family members, friends, and even children in the conversation. This helps address any potential confusion and anxiety on their end.
Second, promote two-way communication. Let them know it is okay to ask questions. Express to your loved ones your understanding of the disease and how it impacts your day-to-day life. Come up with a list of ways in which they can help and let them know how they can be there for you. The list can include anything from daily chores to errands. Also, discuss any limitations that you may experience because of your condition.
Here are a few other ways family and friends can be supportive:
- If comfortable, have those loved ones accompany you to clinic visits. A healthcare provider can answer many of their questions about your disease. Have the provider explain any side effects of treatment plans, complications of the disease, and disease progression. This helps to set expectations.
- There may be times when serious complications can arise from disease, so always identify an emergency contact list and discuss this with both your healthcare provider and your emergency contacts.
- Share articles and websites from trusted sources. The American College of Rheumatology has over 80 free fact sheets designed to help patients and caregivers find information. They include condition descriptions, signs/symptoms, common treatments, and care/management tips.
- Get involved in advocacy for patients like you through Simple Tasks. Involvement helps highlight the impact of rheumatic diseases to not only your loved ones but to lawmakers as well. It’s also easy to do – just visit simpletasks.org/advocacy.
- Scan itineraries of support group meetings and national organizations. More and more organizations are favoring sessions and talks dedicated to patient caregivers and loved ones, including topics such as compassion fatigue. Going to meetings together creates a greater sense of community. It also facilitates the opportunity for our loved ones to connect with other patients and families to share experiences.
- Clinical social workers are available for patients and their loved ones with chronic diseases. They help with psychosocial assessments, care coordination, supportive counseling, and connecting patients and their loved ones to resources in the community.
- Connect on social media by subscribing to accounts on Facebook, Twitter and YouTube that help spread the latest information about various topics, including new research and new treatment options. Many of the national organizations/societies share videos, infographics, and pictorials daily that help keep everyone informed.
Deciding to educate loved ones about your disease can be a difficult process. Identify people that you trust but never feel obligated or pressured to share more information than you are comfortable with. Together, you can build a foundation of support to help you manage your rheumatic disease.
Kanika Monga, MD, is a rheumatology fellow at the UT Health Science Center at Houston. She believes that media can play an important role in improving health literacy. She is a member of the American College of Rheumatology’s Communications and Marketing Committee.