The Power of Patient Advocacy: A Behind-The-Scenes Look
Patient advocacy has a way of pulling at your heartstrings. There are moments that stand out and make you pause to recognize that the work you are doing is changing lives.
Helping others navigate life with IBD
As someone who was diagnosed with Crohn’s disease nearly 16 years ago, I understand how isolating and overwhelming it can be to navigate life with IBD. I rarely, if ever, give my cell phone number out to people I don’t know, but every now and then I come across a newly diagnosed patient who I relate to on a different level.
A few months back I had a phone call with a 20-something who was reeling over her Crohn’s diagnosis and starting biologics. We happen to be on the same one.
Since that conversation, we’ve connected on social media by liking photos and commenting, but this past weekend, she texted me devastated after giving herself an injection that misfired.
Support after a missed injection
She texted me for the first time and said, “Having a bad night. Tried to do my injection earlier and the liquid went all over my leg. There was a little blood, so I know I at least pricked myself, but I don’t know if any medicine went in or how much. Usually, my boyfriend does my shot, but I decided to do this one and I don’t think I pressed hard enough or pinched my skin right.”
When I saw this text come through, it brought me back to experiencing the very same thing, many times. I’ve been on my injection since July 2008. I’ve dealt with several misfires and understand the agony and worry of not administering your expensive medication correctly and not knowing what to do. It’s a helpless feeling to watch the medication flow down your leg like the tears on your face.
I responded to her immediately.
Empowering someone to inject their biologic
“That’s a horrible feeling, even after 10-plus years that has made me cry. Call your GI in the morning or write them on the patient portal, they’ll want you to do another shot. Contact your patient ambassador through the drug company and they will send you another pen if you don’t have one on hand/and to make up for the malfunction (for free). Press the pen hard into your thigh where you almost leave a circular indentation in your skin. And don’t lift up til at least 10 seconds after pressing the button.”
I went on to tell her, “Don’t let this scare you from doing it yourself, you’ll feel more empowered doing it yourself and you can totally do it! I have faith in you. What happened to you has happened to me countless times even after years of practice.”
We went on to text and at the end of the night, she texted me and said, “Thank you for the good advice. Just cried it out a little and doing a calming face mask now. Making some tea. I will mentally plan to do the other thigh tomorrow with the pen I have in the fridge. So grateful I could text you in a moment like this.
Confirming next steps with the doctor
As a patient advocate, it’s important in moments like this to tell peers to consult with their physician—as most of us are not medical professionals.
In this case, the patient, unfortunately, did not hear back from her doctor the next day and was left in limbo. Ironically, I happened to know another GI in her practice, even though we live several states apart, who I was able to email and get confirmation that she should in fact re-do her injection.
She went on to do the shot herself and said, “Perfect! So great and smooth! NO LIQUID!”
The rewards of patient advocacy
This was a couple of days ago—and this interaction is still on my mind. I’m so glad I could be that source of support and comfort for her.
Now, only a few months into her diagnosis, rather than depending on her boyfriend to do her injection, she has the confidence to do it herself. Once you’ve dealt with these challenges and experiences you know firsthand how difficult and disheartening, they can be. It’s the behind-the-scenes mentoring as a patient advocate that often isn’t talked about that tends to be the most rewarding.
How open are you about being diagnosed with IBD?