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Health Activist Interview: Amanda Kasper & Katie Anthony

WEGO Health is excited to share a new community without labels, founded by Amanda Kasper & Katie Anthony.  Below the Radar is a different kind of health community, a safe place for those still searching for a diagnosis where your symptoms and struggles will be taken seriously.

What inspired you both to become Health Activists?

Amanda:

More than three years ago, I started my personal blog. I started it before I got sick. Before my world shifted, and then changed, and then fell off its axis and was forced to start again. I started it because I loved to write. I needed to write. I was ready to abandon each of the many running word documents in my computer, and instead, share my stories out loud. For a while though, I didn’t choose to make the blog public. I needed time to find my footing – to hear my voice grow.

During the first few months, I started experiencing a list full of symptoms. Things I was desperate to put together, to understand, to label, to treat. I saw a handful of doctors. They ran a small number of tests. The answer I was waiting for – it never came. I attempted some remedies, various medications, and saw a marked improvement. I thought it was behind me. I went on to write about life and love and loss, things that started deep in my heart and gravitated to my head.

In October, 2011, everything changed. I was sick in a way nobody could fix. I was dropping weight, losing consciousness, struggling to function, to move forward, to move at all.

When I returned to Chicago in December, I knew this was it. I knew that it was time, that I had waited long enough, that if I didn’t put my health first, I was going to end up in more trouble than I could foresee. So I did. But it still wasn’t the central focus of my writing.

I wasn’t ready for it to be.

In March, when I was admitted to the hospital, I had been off of Facebook and Gmail for nearly a month. I needed time. I needed space. I needed to process what was happening to my head and my heart and my body. So, when I wrote, in the middle of my hospital stay, I posted the link to Facebook. I figured it was the best way to update everyone I knew and loved all in one shot. Five hundred and seventy five people read that post.

And from that day forward, the health challenges I face (currently labeled as extreme visceral hypersensitivity, interstitial cystitis, endometriosis, fibromyalgia, chronic fatigue syndrome, IBS/D with severe abdominal pain, chronic dehydration, anemia, and trigeminal neuralgia) impact my every movement, my every thought, my every plan, every relationship, every everything.

Not because I want them to.  Not because I am any longer allowing them to define who I am.  But because, they are part of me. They define my limitations. My barriers.  They define a lot of things.  But not what’s inside my heart.  That is, was, and always will be mine.

So I guess, in a long, winded answer, I started writing about my health and foraying into the health activist world because my health became a central part of my life. I started writing about my challenges and my moments of vulnerability and weakness because I wanted someone else, anyone else, everyone else to know that they were not alone.

Katie

It’s hard for me to answer what inspired me to become a Health Activist. I’ve always been very open about my struggles, both mentally and physically, since this all began 7 (almost 8) years now.

The simple answer is because I understand. I understand the feelings associated with both diagnosed and undiagnosed illnesses and I know what it’s like to go through the motions because you don’t have anyone who really understands. You can try to fit in here or there, but it’s like trying to fit a round peg in a square hole.

I just want to help, that’s my main goal. If that’s listening, sharing my story, helping others find their voice to share their story, directing them to other resources to better help them—whatever the case is, I want to help. I’ve developed incredible empathy (so I’ve been told) throughout my journey, and I think that’s really what’s making me passionate about this community.

Besides, fighting for your life is a little easier when you realize you don’t have to fight alone anymore.

 

What inspired you to start your new community “Below the Radar”?

Amanda

At the end of 2012, I realized that if I didn’t take my emotions into my own hands, they were going to take me in a way that wasn’t going to be pretty. I downloaded some resources from bloggers I trust and admire, and sat down with a workbook, a pen, a mug of my favorite tea, and the idea that I would map out my goals for the New Year.

In a list of five, the very center goal was to create a space that I could be myself, that I could help others, and that the support group I was looking so desperately for could come together on its own terms, with people from anywhere and everywhere looking for the exact thing.

Without a diagnosis, without guarantee of symptom management or medical intervention or anything really, I decided that the most important thing in the world to me is that something came out of my story. That someone, somewhere changed because they knew what I had faced. Because they had read this blog, or they had read my memoir, or they had joined a community I had created; because they had reached out, because they had said hello, because they too believed in their own story. I wanted someone, anyone, everyone to know they were not alone. That I understood. That someone understood.  I knew that there was work I had to do with myself, on myself, and by myself; but I knew that I also needed a partner in crime.

 

What brought you and Katie together on this project?

Katie

My sister went to school with Amanda and heard of Amanda’s struggles and made the connection of how similar they were to mine. I reached out to her in desperation. In hopes that someone, somewhere understood how much this sucked. How much the pain dominated my life.  How much I struggled to live in a body that traps me and fights me every day of my life.

I remember sending Amanda a Facebook message and asking her to not think I was a creeper. I’m pretty sure those were my exact words. I felt like I was online dating for unknown illnesses. I just sent her a message telling her that I had read her blog (and I sat there at work and read all of it) and that I could relate, and the rest is really just history. I feel like I’ve known her my whole life.

Amanda

I honestly don’t remember anything about when Katie and I started talking, but I remember feeling like I was for the first time in my life 100% understood.  The minute I asked Katie if she thought this was a crazy idea was the minute I knew I had found the perfect partner in crime.

 

What is your vision for Below the Radar?

The vision for Below the Radar was the opposite of loneliness. Amanda had sought out this quote several months ago before there was ever a title or a URL or a commitment for the community, but it’s what she has held onto through its development:

We don’t have a word for the opposite of loneliness, but if we did,

I could say that’s what I want in life…

It’s not quite love and it’s not quite community; it’s just this feeling that there are people, an abundance of people, who are in this together. Who are on your team. When the check is paid and you stay at the table. When it’s four a.m. and no one goes to bed. That night with the guitar. That night we can’t remember. That time we did, we went, we saw, we laughed, we felt. The hats. This scares me. More than finding the right job or city or spouse – I’m scared of losing this web we’re in. This elusive, indefinable, opposite of loneliness. This feeling I feel right now.

But let’s get one thing straight: the best years of our lives are not behind us. They’re part of us.

..Marina Keegan..

Yale Senior 2012

Our idea is simple. To create a community that doesn’t have a label. No matter what your label, if you have a label, no matter what you’re facing or how long you’ve been facing it, you’re part of our family. And we take family seriously here. In 2013, we set out to create the opposite of loneliness.

 

How can others get involved?

To get involved, people can begin to follow our blog or the Facebook or twitter accounts, but we’d like for it to be much bigger than that.

Guest posts: Yes, please. We’d love for our members to take ownership, to share their stories, their pains, their fears, their challenges of being undiagnosed or mis-diagnosed or multi-diagnosed, to share resources and references and things that have helped them to cope. We’re looking to start a section with books and movie titles, informational sources and other inspirational pieces – and we’d be so grateful for our members to help build the content.

IRL events: Both Katie and Amanda would be more than happy to host gatherings of any kind. Amanda is located north of Chicago, and could organize events or get-togethers in the city or in the suburbs. Katie is in Des Moines, and would be happy to do the same (she could probably do some weekends in Cedar Rapids, too!). We also urge our members to get to know each other, and if proximity involves, to become connected IRL in addition to online.

 

What will happen to Below the Radar when you or Katie find a diagnosis?

This question is asked, as it has been asked many times before. Katie and I look at each other, roll our eyes, and laugh. At this point in our journeys, we’ve been told the best they could hope for was symptom management (at best). Although we are holding out hope for a one day miracle, we have both lived undiagnosed long enough to understand the significant mental and emotional challenges associated – and we will never, ever be able to forget or not relate to anyone experiencing this.

Katie is currently living with endometriosis, hypoglycemia, polycystic ovarian syndrome, depression/anxiety, asthma, chronic migraines, wheat/gluten intolerance, and chronic pain from an unknown source.

Amanda is currently living with extreme visceral hypersensitivity, interstitial cystitis, endometriosis, fibromyalgia, chronic fatigue syndrome, IBS/D with severe abdominal pain, chronic dehydration, anemia, and trigeminal neuralgia.

For more information on Katie or Amanda, check out their personal blogs here:

Katie: http://constantlyfighting.blogspot.com/
Amanda:
http://stopthinkingstartwriting.blogspot.com/

And be sure to follow the growth of their new community, Below the Radar.

http://belowtheradar002.com/
https://www.facebook.com/belowtheradar002
https://www.facebook.com/belowtheradar002

 

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  • Guest

    Can we clarify the difference between IBD and IBS please? There is no such thing as IBS/D.  They don’t even stand for the same thing. IBD is Inflammatory Bowel Disease.  It is in your immune system.  IBS is Irritable Bowel Syndrome.  It is in the tissue of your digestive system.  The symptoms can be similar, but the diseases and treatments are vastly different.

  • I believe that IBS-D is a sub type of Irritable Bowel Syndrome, traditionally characterized by diarrhea as opposed to IBS-C, which is characterized by constipation, or IBS-A, where diarrhea and constipation alternate. IBS/D is not meant to be confused with IBD and is also sometimes referred to as IBS with diarrhea. IBS or IBD Health Activists – please comment if we missed anything!
    – Susan from WEGO Health

  • Its wonderful to see two people with similar issues coming together to raise awareness of their cause and try and help people.

    I suffered from digestive problems and skin allergies for years, but since giving up bread, wheat and dairy 90% of my symptoms have stopped, they only reappear when I’m stressed. 

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