Originally posted as part of the Experts by Experience series presented by Mayo Clinic and Inspire.com
By Megan Starshak | Original publish date: July 19, 2019
Everyone always talks about being sick.
My life took an unexpected turn after I was diagnosed with inflammatory bowel disease (IBD). I was lost, trying to navigate the nature of this new disease, this new identity, in a new college where no one seemed to understand. So, when I found a community of patients, I finally felt like I had others fighting alongside me—I found direction.
Finding my place within the community changed my whole world. It felt as if a weight was lifted off me, not having to explain the nuances of life with a chronic illness. My community believed me, they knew my journey because they were on the same one. It was a safe and supportive space to talk about all the challenges and complexities of IBD. We talked about everything—but everything revolved around being...
"I can totally relate, I once had [thing]"
-Anyone who finds out you have an autoimmune disease
"At least it's not cancer"
-Also anyone who finds out you have an autoimmune disease
It's Not Helpful When You Say That
No one knows how to talk to you about being sick. Especially as you are just entering life with disease, or processing a new diagnosis, you'll often find that 'real talk' is bypassed for a combination of pity, fluffy encouragement, unsolicited advice, and even some WTF moments. We like to think that most of this is well-intentioned (although unfortunately not all) but it often misses the mark because those around you are afraid to, or simply don't know how to talk to a sick person about being sick.
Learning to guide the narrative means, in simpler terms, telling people how to have conversations with you. It takes learning on both sides, and it's something I wish I would have recognized and embraced earlier on in my disease...
"You can't pour from an empty cup."
-Norm Kelly
Whatever lessons we've learned about self-care, community care, and compassion fatigue have been amplified by the 2020 global pandemic. The stress and anxiety, the loneliness, the mental effort it takes to process, and the unknown finish line have been brought to the surface for not just chronic illness patients, but most everyone in the land.
I've been in a comfortable place with my own IBD for some time now, and I've stated repeatedly that when you're in remission, it's your opportunity (if not obligation) to give back to those who are where you once were. After all, when I was disastrously sick, navigating a new diagnosis, and learning to live a life incurable, I took what I needed, and I found it from those who were so able to give, even when I had nothing to return at the time.
Now that we're collectively experiencing a similar-but-also-way-different health crisis, I've found myself on both sides...
Emily's Clinical Trial Journey
Emily, like so many Crohn’s patients, has struggled with symptoms on and off for several years. She’s tried nearly every approved medication available, and on top of the everyday pain of dealing with disease, she’s got the added anxiety of feeling like she’s running out of options. Emily’s decision to enter a Crohn’s clinical trial comes from both her willingness to seek out another option, and her desire to contribute to research.
Patients’ participation in drug trials are part of the Clinical Study portion of the FDA approval process, which includes 3 phases. Each progressing phase includes a greater number of trial patients, so the majority of experiences are part of Phase 3. This phase looks at effects on a larger population including demographics, considers side effects, and often uses drugs in combination with others. Previously, during Phase 1 and Phase 2, safety and effectiveness have already been tested.
Hope for a 'Very Challenging Patient'
I was first approached by...
Oh, so you’re getting a colonoscopy?
It’s not so bad. Whether it’s your first or your tenth, I think we can all agree that it’s better than uncontrollable bowels and never ending pain. At least you have an excuse to stay near the toilet. Here are some Colonoscopy Prep Tips.
Let’s look at the bright side of colonoscopies:
2 days with a valid excuse to do as little as possible. Perfect opportunity to ignore your boss and watch Dawson’s Creek from episode 1, and not feel lame doing a jigsaw puzzle.
Cleaning out your system. Even though all preps are hard to get down, and the effects are unpleasant, once you get through, it’s nice to get completely empty and give your bowels a break from their full time job.
Post-procedure naps. After it’s all done, you can head home and take pretty much the awesomest, most refreshing nap possible.
Your first meal back. Two-Four-Six-Eight, who do we appreciate? Solid food. If...
What gifts do you get your friends who have Crohn’s or Colitis?
The holidays are coming up, and we’ve got some awesome ideas that will show them how much you love and support them! Here are 10 ideas that will go great with Ask Me shirts.
Need more? Here are 12 more inspiring, healing, and funny ideas.
10. Lavender Scented Oil – Lavender triggers natural relaxation, and emu oil is a gentle moisturizer that helps heal scars. Olivu 426 handmakes products with all-natural ingredients, and you can add any scent into any product! Sandalwood is another great scent for relaxation.
9. Designer Pill Box – What lovely lady doesn’t appreciate a high fashion case for storing her meds? These small pill cases that contain 3 small containers for medicine on the go, and can be found at more and more retailers, from stocking stuffer priced Charming Charlie’s, to high end Henri Bendel.
8. IBD Healing Plan Cookbook – This new cookbook offers IBD-specific recipes as well as understanding of how a proper diet can...
