There’s a moment I keep coming back to. I’m the one who found out about diabetic autonomic neuropathy, not his doctor. I was researching his symptoms online, trying to make sense of things that didn’t seem to add up, and it kept coming back to this one condition. So I brought it to his endocrinologist myself, described what he’d been experiencing, and she confirmed that’s exactly what it was. And that was it. No pamphlet. No conversation about what to expect. Just a confirmation, and then we were on our own again.
If you had asked either of us before that what autonomic neuropathy even was, we wouldn’t have had an answer. So we kept doing what got us there in the first place: researching on our own. Piece by piece, symptom by symptom, we kept connecting things that had been happening to him for a while, things we hadn’t understood the “why” behind until we finally had a name for it.
So what actually is autonomic neuropathy?
In plain terms, it’s nerve damage that affects the autonomic nervous system, the part of your body that runs all the things you never have to think about: heart rate, blood pressure, digestion, temperature regulation, sweating, bladder function, and more.
Unlike the nerve pain in hands and feet that most people have at least heard of, this type flies almost completely under the radar. When those automatic systems stop working the way they’re supposed to, you end up with symptoms that seem completely unrelated to each other until you realize they all trace back to the same cause.
I’m writing this because I’ve barely seen anyone talk about this condition. The only other place I’ve come across someone documenting real life with it is this Instagram account, and honestly, finding her felt like a small relief, like we weren’t the only ones in the dark. If you or someone you love is dealing with this, I want you to feel a little less alone the way finding her made me feel.
Who He Was Before
My husband and I have been together since we were 16. For years, he ran a landscaping business with his family, worked for one in his adult life, and eventually we owned it together. He was always the guy doing the physical work, the one who could fix just about anything, the one who was outside all day without a second thought. If you want the fuller backstory on how that chapter of our lives changed, I wrote about it here.
That history matters, because it’s the backdrop against which everything below feels so different now.
Piecing It Together, Symptom by Symptom
Nobody sat us down and told us what to expect. Instead, we noticed things happening and slowly realized they were connected.
- Temperature regulation. Before we understood what was going on, he would be freezing in the middle of summer, wrapped in a comforter like it was the dead of winter. Now it’s flipped entirely. We live in Florida, and he can be outside for only a few minutes before he starts to feel like he’s going to pass out from the heat. Both extremes are part of the same underlying issue, his body simply isn’t regulating temperature the way it used to.
- Sweats. These come and go, sometimes tied to a flare, sometimes not, which throws off your body’s ability to regulate its own temperature.
- Blood pressure drops on standing. He’ll stand up and his blood pressure drops instead of adjusting the way it should that he almost passes out. It’s unpredictable, which makes it hard to plan around.
- Digestive issues. Another piece of the puzzle that took time to connect back to the diagnosis. Some people experience feeling full after a few bites of food, loss of appetite, diarrhea, constipation, abdominal bloating, nausea, vomiting, difficulty swallowing, and heartburn.
- Exhaustion that overcomes him doing simple tasks. This isn’t normal tiredness. A flare up can take him a day or two to recover from, and that’s separate from the recovery time when he’s also had a low blood sugar to deal with. This is because his heart rate doesn’t ramp up to match the activity level like it’s supposed to.
- Rare hypoglycemia unawareness. One of the more dangerous symptoms is losing your ability to recognize low blood sugar, since the usual warning signs like shakiness just don’t show up anymore. Most of the time, he still gets the usual warning signs of a low: shakiness, sweating, the familiar cues. But on a handful of occasions, those signs didn’t show up first. Instead, his eyesight changed, tunnel vision, everything going bright and white, with nothing else. The first time it happened, it confused him because he was waiting for the “normal” symptoms to confirm it before treating it. By the time those other symptoms caught up, he was already deeper into the low than he needed to be. This isn’t the usual pattern for him, but it’s happened enough times that it felt important to document, because nobody warns you that a low can show up as a vision change alone.
Other Symptoms to Watch Out For
Autonomic neuropathy shows up differently depending on which nerves have been affected, but here are some other symptoms to watch out for:
- Bladder issues are common too. That can mean trouble starting to urinate, losing control over your bladder, not being able to tell when it’s full, or not being able to empty it all the way, which raises your risk of urinary tract infections.
- Sexual function can take a hit as well.
- Sluggish pupil reaction. Your pupils may respond more slowly to changes in light, making it harder to adjust between bright and dark spaces, including driving at night.
The Emotional Toll
This part is just as real as the physical symptoms, maybe more so.
He was a man who worked constantly, who did physical labor his whole life, and now he can’t get up and mow the grass without paying for it. He gets frustrated having to depend on family members to work on our vehicle, something he could have easily handled himself before all this. Now he supervises instead, and even that wears him out enough that he has to come inside, close to passing out from the heat, after only a little while.
He struggles with depression because of all of this. And I struggle watching it happen to him. It’s heartbreaking in a way that’s hard to fully put into words.
There’s also this strange double-edged sword with his good days. When he feels well enough to push himself, he does, and then he “pays for it” for the next day or two. I try not to nag or remind him of that when he’s having a good day, because he deserves those moments where he doesn’t have to think about his body. But I also know what’s coming afterward. It’s a balance I haven’t figured out how to strike gracefully, and I’m not sure there is one.
Where Things Stand Now
We’re in the process of trying to get disability for him. Right now we’re waiting on a hearing, and we’ve been told it could take over 70 days just to hear back. It’s one more layer of uncertainty on top of everything else, but it’s part of this story too.
Why I’m Sharing This
Before his diagnosis, we had never heard of autonomic neuropathy. Nobody explained it to us. We had to become our own researchers, connecting dots on our own, often realizing “oh, that’s why he feels that way” only after the fact. If this post helps even one other person recognize what’s happening to them or someone they love a little sooner than we did, it will have done what I hoped it would.
If autonomic neuropathy is something you or someone you love is navigating, I’d love to hear from you in the comments. And if you’re just now learning what this diagnosis means, know that you’re not imagining the strange, disconnected symptoms. They’re real, they’re connected, and you’re not alone in trying to figure it out.
For more on our diabetes journey, check out Type 1.5 Diabetes: What Is LADA? and What I Wish People Understood About Diabetes.
Photo by Valeria Boltneva
Daily Deals from a Nerd Mom 
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