A Curious Case of SIBO

FS is a Beekeeper in her free-time. FS has a high stress job. Who doesn't tho?

In writing the Beautiful Voyager, I dig into how stress affects our bodies, sharing the hard-won discoveries about my own lifelong migraines and nausea.

I've wondered how people in my life are struggling with confusing physical symptoms at any time. The journey to diagnosis can be an uphill and silent battle. Sometimes it's just a matter of getting lucky and reading a blog post at the right time.

To that end, I'm sharing a little Q&A with a friend of mine, who I'll call FS. After years of trying to figure out what was wrong with her, FS was diagnosed last year with SIBO.

SIBO's a confusing condition that mimics Irritable Bowel Syndrome in many cases. It's actually a result of a bacterial overgrowth in the lower intestine. When she first told me about it, it was the first time I had heard of SIBO. I immediately had a feeling it wouldn't be the last. Indeed, just last week another friend was diagnosed with it.

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MA: How long did you know something was wrong before you were diagnosed?

FS: A little over 3 years.

MA: What do you tell people when they ask what SIBO is?  

FS: I always tell them it's "digestive issues."

MA: Were you ever misdiagnosed?

FS: Yes, I was misdiagnosed with IBS. I don’t have IBS.

MA: Does anyone else you know have it?

FS: No, not by formal diagnosis. (Except the friend of yours you connected me to).

MA: It feels to me like SIBO is one of those things that a lot of people suddenly are finding out about. Has your doctor mentioned an uptick in cases?

FS: You can find articles and knowledge of SIBO only 6 or so years back on the internet.  It's something that doctors have started paying attention too the past couple years, and only GI specialists really know about it.  You’ll find that primary care docs and nurses don’t know about it, and as a result they misdiagnose it. You can be given medications that will actually make it worse.

MA: What do you have to do differently?

FS: I've had a full revamp of my diet and how I think about meals. It's helped.

MA: How are you feeling now?

FS: Still having symptoms but better, emotionally more so than physically, because I at least know it’s not just “stress." It’s a thing that I have and I'm dealing with it.

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I'd love to hear more from others who have successfully dealt with confusing physical issues and who are starting to make progress. What steps did you take? What got you feeling better?

Feeling better, in dance form

I Wish I Had Known That Amorphous Pain was Not a Given

This is what amorphous carbon looks like on a structural level. Seem familiar?

If there's one thing I wish I knew as a twenty-year-old, it's that migraines, nausea, and stiff necks didn't need to be a regular part of my life. I don't blame my doctors, asking me vague questions I couldn't answer. I was a crappy communicator when it came to describing what I felt. I didn't know how to sort and label the chronic pain that came at me from so many angles. I just chalked the whole ball of pain up to being a migraine person and tried to move on.

Here I am meeting my nephew for the first time. That's a huge scarf tied around my head in the attempt to kill a migraine.

But over time my headaches got worse. In my late 30s it was harder to ignore the impact on my life. I started seeing more doctors and tracking everything I experienced, meticulously noting how my hormone cycle intersected with my other symptoms. This was the point at which I finally started to articulate everything I was feeling. A neurologist was finally able to help by diagnosing me with Generalized Anxiety.

Why am I telling you this? I believe I am not alone on this terribly confusing path. In the time since I was diagnosed, I've talked to tens of people with similar symptoms who also didn't realize that anything could be done about it. They were like me: living with chronic pain, not knowing that anything could change. Simply talking with them has made a huge difference for me, and, as they've told me, for them. 

What do they have in common? They are people who have always thought deeply about things. They've frequently wondered if others ever feel the same way they did. They are often researchers, always looking for the answers. Their friends and family have told them not to think so much ever since they were little kids. They're sensitive and aware of the suffering of others. Another way to put it: at times, it feels like they get stuck in their heads. 

I explain to them that I think of these as the common traits of overthinkers. 

In response, they tend to either say, "Nah, that's not me," in which case, we move on to other topics, or their ears prick up. "That sounds familiar," they might say. "But what's wrong with overthinking, exactly?"

My response is always the same: If you aren't experiencing pain or adverse effects, there's nothing wrong with being an overthinker. But too often overthinking has an obsessive "got to figure things out" quality. As a BV* I know puts it, "In obsessing over figuring things out, you tend to neglect your priorities and what is important in your life."

Or, as a concrete litany of ifs: If your shoulders and neck are so tight that you need to take medicine for them every day. If you experience lightheadedness or dizziness regularly (or if you faint). If you have migraines that affect your ability to work. If you have nausea that makes it uncomfortable to travel or engage in other activities you love. If physical pain that's hard to pin down but reoccurring. If if if.

When again the person I'm speaking with starts to nod, I know that it's time for me to reassure them that they are far from alone. Others have felt--are feeling--this way. I tell them that life doesn't have to be like this. "You don't have to feel this crappy," I say.

On my 40th birthday AKA the day I finally started to realize that I didn't have to feel amorphously bad anymore.

For many of the people I've spoken with in the past year, this is the beginning of a new way of thinking. It's confusing and difficult to accept that it's your mind that can be hurting your body the way that it is, but for many of us, it's true.

"You don't have to feel amorphously bad anymore," I say. "There are many, many things you can do to feel better. But one of the biggest things can happen right now. It starts with realizing that you don't have to live this way."

I had a hard time figuring out what this post should focus on. Press play to listen to a great discussion I had about it beforehand on Anchor.

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*BV = beautiful voyager, an overthinker who experiences physical symptoms as a result of stress.