How does treatment for multiple sclerosis affect someone’s social life? Does medication for Hidradenitis Suppurativa improve emotional well-being? Can exercise make daily life with type 1 diabetes easier?
We all know that questions like these are important for people living with a serious health condition, yet most don’t know that research doesn’t cover stuff like this. In fact, research usually focuses on the effectiveness of treatments and more easily measurable outcomes. Accurate data about patients’ quality of life is not systematically collected and questions like those listed above often go unanswered.
That’s why we advocate for empowered patients sharing their stories. Your story has the power to make a huge difference in other peoples’ lives. We want to give you the tools to make a real difference. Here’s how you can help others by sharing:
1. Join a Peer Support Group
Group therapy and support groups can take on many forms and exist for individuals living with all sorts of conditions. There are even support groups for caregivers, family, and friends. You may think this type of interaction isn’t what you’re looking for, but countless patients tell us that support groups (either online or in person) have changed their lives and the way they approach their health. The following are just a few places you can start:
- Facebook Groups. There is a Facebook group available for just about every topic. The best part? You’ll be connected to people you can speak to 24/7.
- Meet-Up. If you’d like to do more than just talk, many Meet-up groups have a focus on activity. You might find a hiking group for cancer survivors or an autoimmune cooking club near you. If there isn’t something that fits your interests, Meet-up makes it easy to start one.
- Healthfinder. Brought to you by the U.S. Department of Health and Human Services, Healthfinder can connect you with a support group for just about anything.
- NAMI. The National Alliance on Mental Illness offers support and education for people suffering from mental illness and their families.
- American Cancer Society. If you or someone you care about has cancer, these programs offer support and encouragement.
- FCA. The Family Caregiver Alliance offers four different online support groups for caregivers and their loved ones, including a group coping with Huntington’s Disease and a LGBT caregiver group.
- Autism Speaks. Share and learn firsthand about local autism services and resources from parents in your area.
2. Write Online or Print Articles
Writing is a powerful tool. Just getting thoughts and ideas on paper can have a cathartic, calming effect and it also helps you think! Plus, if you’re ready to share your insights with the world, you could provide support and encouragement for others with similar experiences.
Here are a few blogging platforms to consider:
- WordPress. WordPress is one of the easiest places to start blogging. They offer free blog templates and have a built-in community of publishers online.
- Medium. A place to read, write, and interact with stories on all kinds of topics.
- Tumblr. Tumblr has a strong emphasis on community. Share stories, pictures, video, links, music and get to know other bloggers with your condition.
- Submit your story to Health Stories Project. We’re always interested in new stories to feature on our blog. Submit yours and we’ll follow up!
3. Participate in Research
Research is at the heart of all medical advances. You can offer insights by taking surveys or even join a clinical trial. While this decision should never be taken lightly, people participate in research for many reasons. Some participate to help others and contribute to scientific advancement, while others like the idea of additional care and the possibility of receiving the newest treatment(s) available. Whatever the reason, if you’re interested in opportunities to help, check out Why Should I Participate in a Clinical Trial by the National Institutes of Health.
Your health story has the power to make a huge difference. Here are 5 ways to share it:Click to tweet
4. Talk about Your Experiences on Video
Online video blogs (or vlogs) can help fellow patients, physicians, and other organizations. Vlogging is becoming increasingly popular amongst patients who are willing to chronicle the good, bad, and ugly of their condition. Doctors and healthcare organizations also watch these videos to better understand the patient experience. Here’ are a few places you can get started:
- YouTube. The original video platform, YouTube has a big, engaged community. Many influential vloggers got their start here.
- Facebook Live, Instagram Live, or Periscope. Think you’d rather skip the editing and connect with people in real time? There are several apps for that. The cool thing about going live is that your audience can ask questions and give feedback while you’re recording.
- The Health Stories Project App. If you’re interested in submitting your story to us in video format, we’ve got a great tool you can use. Just download the app, register, and choose the “Get to Know Me” story type to get started.
5. Join Health Stories Project
Our goal at Health Stories Project is to empower patients and caregivers to share their experiences. Whether it’s in a blog post, at a speaking engagement, in interviews with the media, or even a special video project – we have lots of opportunities to share. Join our community and we’ll let you know about projects that match your interests and background.
If you decide to share your story through blogging or another public platform, please check out our tips for sharing. This post offers insights into getting started and presents some important points to consider.
Want to get started? Join now and help us get the word out – when more people share health experiences, we get better resources, better treatments, and better communities.