This past week, I had the opportunity to help share a few psoriatic arthritis patient stories that will be published on HealthCentral. Click here to see the inspiring videos we captured!
I’m extremely passionate about sharing my own story, but why?
You may think – Ok, Julie. I don’t really want to know everything about your life. Why do you feel like you need to share it?
Well . . . I’ll tell you why.
I spent December 2012 till the summer of 2013, really not wanting to leave my bed. I was extremely depressed, in pain, inflamed . . . feeling really hopeless, angry and sad. I spent that 6-7 month time period not allowed to put any weight on my leg. I had been living this go go go consultant lifestyle, and had been forced into being bedridden, in my parents basement, for months. I sunk into a deep depression and hated life. Never in my life had I been a victim of anxiety, but I started having HORRIBLE anxiety attacks. If I was going to leave my house for a doctor’s appointment, I’d have to take a shower hours before. I’d start hyperventilating and get so upset. There were times when I did leave my house only to have complete meltdowns because I felt so overwhelmed, so over stimulated and just wanted to be back in my bed. I literally didn’t want to leave my bed. I was in constant pain, I had gained so much weight because of all the medications I was on (and all the ice cream that “made me feel better”) and no one could really understand what I was going through.
During that time I found #SpoonieChat on twitter, I started connecting with other patients and I started reading other patient’s blogs.
It was SO SO SO therapeutic to read how others were going through the same thing as I was.
It was so therapeutic, to connect with others who completely understood what I was going through.
It was so therapeutic to find people who just got ME and MY struggle.
I started to realize I wasn’t alone in my battle, there were a ton of other people out there who were going through the same thing I was. I started connecting with them, reading their blogs, sharing experiences, successes, setbacks, and support.The more I kept connecting with people, the better I started to feel.
That summer my parents took my brother and I to Clearwater, Florida. We always go on a family vacay, but this was a much needed one as I wasn’t in the best place. I usually LOVE to travel. I’m always dying to get on an airplane to go ANYWHERE. But that summer I was so anxious. I honestly didn’t even want to go on the trip. My nerves were off the rail – my body was so not happy with me. I remember sitting on the plane ride down, writing on my iPad, about how I wish we weren’t going on vacation. To anyone who knows me, that is SOOOOOO NOT ME.
There are two sure-fire ways to get me in a good mood – anything Christmas and Disney! (Ok, 3 ways… Celine Dion as well!) Surprising me, my parents took us to Disney 2 days of our trip. It had been the first time we’d been to Hollywood Studios since they opened the American Idol Experience. Walking into the park I knew I wanted to audition for it. I STILL can’t believe I even WANTED to do it?! I had been having severe anxiety attacks for the past 7 months, yet I still wanted to get up on stage and sing… just like I used to! I had grown up singing on stage and I was craving something of “normalcy”!!!
Singing Journey’s Open Arms and Martina McBride’s Independence Day, I was cast in the show.
I made it to the live Idol show in Hollywood Studios!! 5pm show today!!!! Ahhhhhhhhhh Producer wants me to sing Martina’s Independence Day!!!! #disney #idol #americanIdolExperience #familyVacation #voteForMe
See this Instagram photo by @itsjustabaddaynotlife * 33 likes
I spent the next few hours practicing in their recording studio, bonding with the other 2 girls that had been cast in the show and hanging out in the swanky American Idol studios.
Then it was show time!!!
The judges took the stage, “Ryan Seacrest” hosted the show and the singing commenced.
I was the 3rd to go, so I watched as the other two girls tear it up.
I started getting nervous. WHAT THE HELL WAS I DOING?! I was sitting there on stage, with my crutches, feeling so overweight, yet – I was SO EXCITED to get out and do something that I loved to do. SING.
Soon it was my turn. I hobbled to the middle of the stage and the “Ryan Seacrest” host took my crutches away. I wanted to be able to hold the microphone and use my arms, so I had asked them to take them for me.
In that instance, everything went away. The pain, the meds, the doctors appointments, the hospital visits, the nerve injections, the melanoma diagnosis, the fear I’d never be able to walk again without crutches.
It was me, singing on stage, in an intimate 800 person theater.
And guess what?!
I ended up winning my show!
As I stood up there, I teared up.
I told the audience that I couldn’t believe I was up there singing because I’d spent the majority of the year in bed and I was so proud of myself for getting up there.
It was in that moment that I realized that just because I now had all these diagnoses attached to my name, didn’t mean I couldn’t still live an amazing life.
Since I won, I made it to the final show of the day, where a ridiculously talented Pastor ended up winning his way to audition for the real show.
All in all, the whole day was so amazing. So touching. Very life changing.
When I got home from that trip, I started my blog It’s just a bad day, not a bad life (itsjustabadday.com) and decided I was going to use my mess as my message and help others in similar situations.
Sharing my own story has helped me by allowing me to processes everything I’ve been through and process all my emotions, feelings and pent up frustrations. BUT, it’s also helped me because it’s helped me connect with so many others who have been able to have that “ME TOO!!!!” moment. Each of us have our own struggles, challenges and obstacles to overcome – but there are SO SO SOOOOO many similarities between our stories.
HealthCentral recently published this post, talking about the benefits of sharing your story. Check it out:
At HealthCentral, we know the importance of sharing the stories of people living with chronic conditions. We understand that your diagnosis doesn’…
I’m so thankful for sites and companies like HealthCentral, WEGO Health, patient foundations, CreakyJoints, etc. that help spread the patient voice. At the bottom of the above HealthCentral article, there is a link for you to submit your own story to share or you can click here and be taken to the StoryTelling project form!
There are so many different ways you can share your story. It doesn’t have to be as elaborate as starting a blog and making it your top focus. It can be as simple as connecting with other patients in your area, or even online, to talk about your struggles and to help support each other.
If I could give you a piece of advice, I would say don’t be ashamed of your story. Your story is YOURS. So own it – every single bit of it. The ups, the downs, and the in-betweens.
So I ask you. . . Are you sharing your story or are you keeping it inside?
Sharing looks different to everyone, so figure out what fits and works best for Y O U!
Wishing You A Pain Free Day!
Before you go . . . Check out these past posts: