“It’s Not Helpful When You Say That”

“It’s Not Helpful When You Say That”

"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 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 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 journey. It cuts to the chase of...
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When Your Cup Is Almost Empty

When Your Cup Is Almost Empty

  "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...
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Pack Health For IBD – Patient Health Coaches

Pack Health For IBD – Patient Health Coaches

As a patient of Inflammatory Bowel Disease, have you ever felt lost? What a ridiculous question. We've all felt lost at one time or another. Managing the chronic illness experience is confusing, time consuming, exhausting, and certainly doesn't come with a guidebook. When we recently heard about Pack Health and their entrance into the IBD space, we were extremely excited to see someone else recognize this gap - this need for a guide - and put together a program that actually works to do it successfully. Pack Health works with IBD and other chronic illness patients to be strong partners in the patient experience. The program works by matching you with an expert that's educated and experienced in navigating the specific challenges of IBD, and they do it at a professional level, so they can be trusted to provide reliable and accurate resources. This health coach connects you as a patient, to all the points you manage, and helps you get it all...
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HealtheVoices5

HealtheVoices5

HealtheVoices 5: A Little Heart Can Do Big Things We were honored to have attended the #HealtheVoices19 conference: A Little Heart Can Do Big Things. At some point (or probably many points, the conference was a blur!) I was asked, as a first year advisor, how HealtheVoices has changed since its inception. It took me a while to figure out how to respond to this, because honestly, there are so many things, and growth like this takes time to absorb. The first year was like a good first date. We knew there was potential, we had an idea of what we wanted, but we just needed to figure out how to build up. Year two saw some growth and familiarity come into play. By year three, we had found our groove, and from there, a really, really good thing just became greater and greater. The faces that have experienced, and contributed to, HealtheVoices over the years have brought in some different perspectives, and...
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GBM’s Buttload of Prizes Giveaway!

GBM’s Buttload of Prizes Giveaway!

Thanks for stopping by. This sweepstakes is now closed. Thank you for being a part of our IBD community. We’re celebrating reaching 10,000 Facebook fans with our Buttload of Prizes Giveaway! You can earn up to 4 sweepstakes entries by responding to prompts on the social network of your choice. But first, check out this amazing prize pack! Check out the IBD Prize Pack One winner will be randomly chosen to receive this ENTIRE ridiculously awesome haul. Two additional winners will be randomly chosen to receive $50 Amazon gift cards. By the way, most of the prizes here were generously donated to this prize pack. To help say 'thanks', please consider supporting these companies through purchases and social engagement! Winners will be chosen on Dec 21, 2018. I Heart Guts Plush Intestines We don’t even have to say anything about how awesome I Heart Guts is. Their intestines plush is a must-have for IBD patients, because, well, we can’t think of a single reason not...
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Gutless, Glamorous, and Going After Awareness

Gutless, Glamorous, and Going After Awareness

American Eagle’s intimates brand, Aerie, has always been a leader in featuring real, unretouched women in their product campaigns. They do a great job of not making the individuals featured seem like outliers, or the spotlighted exception to the traditional model – rather, they’re there. They’re featured in ads and product listings, no big deal, as if they were the norm. Because, guess what, they are the norm. So this week when we tapped into our social feeds, we were super excited to see a face we recognized right there on the product listing, our friend Gaylyn Henderson of Gutless and Glamorous. There’s no denying Gaylyn is gorgeous and brave and strong and unashamed. She’s the perfect representation of ostomates and IBDers for a spot like this. We’re SO proud of her and so overjoyed to see a company like Aerie include her among others with varying diseases and disabilities in their product features. Having women like her featured is a total...
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Listen. #HealtheVoices18 Recap

Listen. #HealtheVoices18 Recap

"Listen" wasn't the theme of the 2018 #HealtheVoices conference. It was actually Stronger Together. The #StrongerTogether theme was reflected throughout the entire conference, as empowered patient advocates and industry experts came together for valuable sessions on things like podcasting, caregiving, photography, social media, and so much more. Attendees informally got together to host impromptu Facebook live sessions, Twitter chats, and even in-person meetups. Nearly everyone brought their skills to share, enough for the whole class. Collaborate, learn, and become Stronger Together, we did. That same theme was reflected as attendees shared their own disease stories and experiences within their own condition communities. Being diagnosed with one condition made individuals stronger for when a second diagnosis came along. It has made people stronger when chronic conditions turn, and now the patient is the caregiver. Every single person in attendance has grown stronger because of the things life has handed them, and then, because of the communities they've built around them. An empowered patient advocate...
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Emily’s Clinical Trial Journey

Emily’s Clinical Trial Journey

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...
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To Talk, or Not To Talk?

To Talk, or Not To Talk?

To talk, or not to talk? That is the question. Okay, so if Shakespeare were here and had Inflammatory Bowel Disease he would totally be asking you that exact question right? I COMPLETELY understand that talking openly and honestly about Inflammatory Bowel Disease, whether you have Crohn’s Disease or Ulcerative Colitis has probably sent many of you to run and hide behind the back of the sofa. Come out…please come out? I get it, I’ve been there myself… It can be embarrassing, hard to talk about and some of you may prefer to keep it all to yourselves. Keep your ‘secret’ hidden away because that’s what makes you feel most comfortable. Not having to talk about your illness whether it be due to feeling ashamed, frightened or a burden on other people, these are all natural when someone brings up the topic of ‘discussing’ IBD in a very public way. We have all felt annoyed or angry when someone says a really mean comment....
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I’m Sick-Sick

I’m Sick-Sick

So now that the holiday season has come and gone, the New Year is usually a time when we all reflect on the previous year and think about how we want to change going forward. I took this time, however, to think about how I spent my holiday season – sick. And no, I wasn’t having a flare and out of control Crohn’s symptoms, which is what the holidays (mostly over-eating) usually bring for me. I had the flu. Type A and B. Let me tell you: when I was in that doctor’s office and I was told that the flu test came back positive for both Type A and B, I was floored. A flu diagnosis is usually maddening for a typically healthy person, but for someone with a chronic disease and a suppressed immune system, it’s terrifying. What could usually last a week could possibly last 3 weeks or more with an immune system so compromised like mine is. I...
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