6 Ways to Successfully Tell Your Story of Having a Chronic Illness

My journey with telling my story happened by accident five years ago. After having psoriasis for over 15 years I grew tired of the shame, hurt, and embarrassment that accompanied the disease. I wrote a post on a psoriasis support group titled “My Suicide Letter,” which wasn’t about a physical death but one where I killed the things that held me back the most, like fears, self-doubt, and low self-esteem, so I could truly live. The letter went viral in the psoriasis community and was sent to the National Psoriasis Foundation (NPF). Little did I know that this would be the beginning of my life’s passion and purpose.

In the last five years, I’ve had the opportunity to share my story with thousands. As I continue to tell my saga with psoriasis, I now have the honor of looking for others to feature in my writing. I’ve learned a lot about telling one’s story and having a big “reach” If you are looking to share your story, check out these best practices to get started:

1. Find your niche, create a blog

My first encounter with the NPF was at a volunteer conference in Washington D.C. During the event, there was a workshop on how to tell your story using a blog. They had a few psoriasis blogs featured. At that moment, I made the decision to tell my story through the use of words. I considered blogging a safe place where I wouldn’t be exposed to the judgements of others. It soon turned into something much more. If you want your story to be heard, the first step is to write it yourself. Blogging is a useful way to create a platform to share your story with others.

2. Be a guest, have a guest…

When you create your own personal blog, don’t forget the importance of blogging on other sites. This will expand your reach to other audiences and new people. Start friendships with people in your condition’s community and build true relationships. Don’t forget to invite them to blog on your page as a guest writer. When you share their post, you draw the attention of new people to your blog.

3. Make sure you are ‘findable’

As a patient recruiter, it’s my job to find individuals with a story to tell. My methods of searching for these people include personal relationships and social media. I find a lot of people online but, depending on the circumstance, sometimes it is hard to find their contact information. If you want to expand the reach of your story, make sure you add contact information to all posts, including videos. Be sure to have a contact page on your blog. Add your email address on Facebook, Twitter, and Instagram. Be easy to not only find, but also to contact. So many people have missed out on an opportunity to share their story with a large audience because they were in theory “unreachable.”

4. Go public

To be seen, you must be public. I’ve battled with this topic myself, to go public or to stay private. I soon learned that in order to build your followers and to receive the attention of media outlets, you should go public with your accounts. A lot of reporters have found me based on public posts on Twitter and Facebook. Also, your posts and tweets will reach more people if they are public verses private. For example, on Facebook, if someone on your page shares a post that is assigned to “friends,” the only people who will see it are the friends you and that person have in common. If they share it and the post is on the public setting, ALL their friends have the opportunity to see it, which gives you more reach.

5. Your pitch

If people don’t come to you, go to them. I’m referring to the media. If you aren’t receiving the attention you would like from the above tips, it’s time to take matters into your own hands. Pitch your story to media outlets by submitting your biography, your story, and why it’s newsworthy. The best time to do this is a week or two before the awareness month, week, or day for your disease, because this is often when you will receive the best results.

6. Contact the public relations department

Every condition has an organization that represents patients in need. If you haven’t already, find yours. Once you find it, reach out to the person who leads the public relations (also sometimes called media relations) department, introduce yourself, and let them you know that you are willing to share your story. Provide them with a link to your blog and any other media materials you might have.

But your initial contact shouldn’t stop there — it’s important to remember that you are building a relationship. Reach out periodically with helpful information in the field or just an offer to buy the person coffee. When news outlets are looking for people to interview for specific stories concerning a particular disease, reporters will often reach out to organizations for people with the condition to interview.

If the organization in your disease area knows how to 1.) reach you easily 2.) that you respond quickly in time for reporters’ deadlines, and 3.) you are on message about your disease and can convey accurate information about it, you will be the perfect person for them to pitch to the news media. Additionally, many organizations have magazines and blogs that feature patients, so you could potentially be a part of that media outreach as well.

7. HealthCentral's MyStory platform

HealthCentral is providing the opportunity for those of the chronic life community to share their stories of trials, tribulations, and triumphant moments through a new tool called "My Story." The tool allows individuals to share their story, which will help inspire and show others they are not alone in fighting chronic illness. The tool even does some of the work for you - by providing a template that helps guide you on getting started and what to talk about. This is an opportunity to share your story with millions!

HealthCentral is currently looking to feature people with psoriasis, Crohn’s Disease, ulcerative colitis, and psoriatic disease. Check out this article on the importance of telling your story and then fill out our brief story interest form!

Alisha Bridges has battled with severe psoriasis for over 20 years and is the face behind Being Me in My Own Skin, a blog which highlights her life with psoriasis. Her goals are to create empathy and compassion for those who are least understood, through transparency of self, patient advocacy, and healthcare. She is currently a post-bach student at Georgia State University pursuing a career as a Physician's Assistance—her passions are dermatology and sexual health. Alisha also shares her passion as a Social Ambassador of the Psoriasis HealthCentral Facebook page where she shares timely tips, stories and insights on living with psoriasis. You can also find Alisha on Twitter.

Alisha Bridges
Meet Our Writer
Alisha Bridges

Alisha Bridges has dealt with psoriasis since 7 years old after a bad case of chicken pox triggered her disease to spread on over 90% of her body. For years she hid in shame afraid of what people would think of such a visible disease. She has suffered from depression, anxiety, and panic attacks due to psoriasis. Years ago Alisha wrote a letter entitled “My Suicide Letter.” The letter was not about actually killing herself but killing parts of her like low self-esteem, fear, and shame so she could truly live to her fullest potential. This proclamation catapulted her into psoriasis and patient advocacy. Following this letter she created a blog entitled Being Me In My Own Skin where she gives intimate details of what it’s like to live with psoriasis. Alisha is a community ambassador for the National Psoriasis Foundation and has served her community in countless ways to help give a better understanding of what’s it’s like to live with psoriasis. Her life motto is the following: “My purpose is to change the hearts of people by creating empathy and compassion for those the least understood through transparency of self, patient advocacy, and dermatology.” Alisha is also a Social Ambassador for the HealthCentral Skin Health Facebook page.