Raising awareness by educating others can help your cause.
When faced with a chronic diagnosis, giving time or energy to anything beyond immediate health needs may seem daunting, or even impossible.
And sometimes that’s OK. But don’t underestimate the impact of raising awareness for your or a loved one’s condition.
The rewards—including easing loneliness, advising others, raising funds toward better research or educating the medical community—could have a far-reaching benefit for you and others.
Consider these strategies for effectively raising awareness among friends, family or the general public.
Tell your story
Many people with rare diseases live a long time without meeting another person with the same diagnosis. Hearing the experience of another person can help them feel less alone or in the dark.
According to a study on bloggers with a chronic illness published in the Journal of Medical Internet Research, people with chronic pain or illness who blogged about their experience felt a lessened sense of isolation as well as a greater sense of purpose.
Thankfully, there have never been more opportunities to share stories. Find the one that works best for you and give it a try.
Here are some ideas:
- Find a blogger, news source, TV station, etc., covering a related topic and offer to be interviewed or write a guest blog.
- Contact a rare disease organization and see if they’d like to share your story.
- For a more private option, join a support group. Check your local church or hospital.
- Or, join a group from your home. Try Facebook groups or online support communities for connecting with likeminded individuals.
Tip: Consider whether any online forum you want to join has security settings in place. Do you have to create a username in order to access information? Is the site secure (does its address begin with https://)? Is the Facebook group classified as “private”?
Understand your disease
The more up-to-date and accurate information you have about your disease, the more beneficial and effective awareness you can raise. Educate yourself as best you can by using online or print resources, talking to others with your disease, finding organizations related to your disease or joining support groups.
According to a 2007 Pew Research Center study on health care and the Internet, 67 percent of people who go online to search for information regarding their chronic conditions do not consistently check the source and date of the health information they find there.
Check the source of your information and its date—the most recent peer-reviewed journals, certified organizations, multiple medical professionals, etc., are safer bets than an encyclopedia entry from 1970.
Well-established communities with a social element allow you to learn from others who have gone through something you have questions about.
Even if you’re looking for medical information about your disease, your peers have a lot to teach you. But keep in mind that not everyone is an expert. A quick Google search of the people offering suggestions can often help you better measure the validity of their claims.
Communicate strategically
Often the first people we communicate with during times of health crisis are family members. It’s a great idea to talk with both immediate and extended family, because they can offer support, but also because if they are aware, they might inform you about any family history with the disease.
The Office of the Surgeon General thinks this is important for all families to talk about and even provides a tool online for compiling a “Family Health Portrait.”
The tool, the office says, can help with earlier diagnoses of hereditary diseases as well as provide information on risks that run in families, so that preventative measures might be taken.
To avoid miscommunication or missed networking opportunities, try these strategies for talking about your or a loved one’s disease.
Prepare
Prepare for communication with friends and family by thinking through and anticipating their questions and feelings, and having some idea of what you’d like to convey. What do you want them to know about how you feel? What will you say if they don’t respond as you hoped? What if they ask to help?
If you’re talking with someone you aren’t as familiar with—a class, a journalist, a doctor—what do you want to be sure they know after they meet you? Consider including your symptoms and process of diagnosis, because this information will aid medical professionals as well as others seeking a diagnosis.
Plan
Making a plan to specifically connect with others is beneficial for a lot of reasons, one of which can be to learn more about communicating your condition and connecting with others who are working to do the same. Conferences, meet ups and other networking events can help you find places to tap into others’ awareness or advocacy events.
Reflect
Take time after an event or conversation to reflect on what worked and what didn’t. Did you miss any opportunities for connecting with others? Do you regret things you said or that went unsaid in communicating with certain people? Try to think of ways to prevent similar things from happening.
Pay it forward
Keep the conversation going by sharing your communication or other experiences at conferences, with organizations or in those online communities.
Communication is at the heart of raising awareness. The more practice you get, the more effective you will be in taking active measures to tell people about your disease.