Differential: Life in the In Between

My Chronic Life: Entry Four

There is a particular kind of challenge that comes with knowing just enough. I have diagnoses; tangible ones, with names, meanings, clinical definitions, and specialists who understand their connection.

Terms like Neuropathic POTS, Orthostatic hypotension, and Small fibre neuropathy took months to diagnose. These names once felt like finish lines, but answers haven't given me solid ground. Instead, I stand in another doorway, one foot in what I know, one in deeper uncertainty. This is the in-between, where we have some puzzle pieces but not the frame.

The diagnoses I have tell a portion of the story, but they are not the whole story. They are symptoms of something else, a root cause that hasn't been named yet. Moving from my current understanding to what might still be uncovered, the most common connectors for a constellation like mine are autoimmune neuropathy or paraneoplastic syndrome, a condition where the immune system, triggered by an underlying cancer, turns on the nervous system by mistake.

That last one sits differently from the others. Most often, paraneoplastic syndrome is caused by small-cell lung cancer. I have unexplained lung nodules, and my presentation of POTS with severe orthostatic hypotension and progressive nerve involvement is most consistent with paraneoplastic syndrome or a rare autoimmune neuropathy. These are now at the top of the differential list.

Last month, we ruled out blood cancers, which I thought was the end of cancer possibilities. Now I'm back in that uncomfortable unknown. I know worrying before confirmation is pointless, but heaviness still settles in when I fall out of the present.

If you are living something similar, I want you to know this space has a name. The in-between may be the most difficult emotionally. Human nature goes to the most challenging outcome, clinging to the weight of a possibility that hasn't been confirmed or ruled out. This is its own experience, and it deserves to be acknowledged.

This stage is difficult because I'm no longer in the abyss. This is the stage I thought I would have clarity and certainty, but I'm left knowing what the possibilities mean; none are great, and some are terrible. For now, there's nothing to do with this knowledge but carry it.

My nervous system is worsening. The neuropathy that began as an occasional nuisance has become a steady, encroaching presence. My autonomic nervous system, the one responsible for regulating involuntary, life-sustaining processes, including heart rate, blood pressure, digestion, respiration, and body temperature, is moving toward failure. I feel it, my doctors are monitoring it, and I live inside the evidence of it every day.

Most medications to manage tachycardia or orthostatic hypotension aren't options for me. My case is unusual enough that standard treatments carry more risk than benefit. So I focus on what I can control: building exercise tolerance, eating whole foods, avoiding alcohol and sugar, and taking anti-inflammatory supplements. Beyond that, I watch my symptoms progress, understanding more but still lacking an agreed protocol or grounding treatment. This is not unknowing; it's knowing, waiting, and trusting that the next step will reveal more.

These past couple of weeks, I have been thinking about what it means to meet your body where it is, something I wrote about in my last entry. Building from Entry Three, which was about acceptance and turning toward what is rather than mourning what was, I now find myself trying to focus on what is, not what could be.

This is one of those life seasons that refuses to settle. As I look outward, Alberta has given us a strange in-between this year, too. Winter has never fully committed; we've had warm days that felt like promises, then snow returning just as the crocuses pushed through. Spring keeps arriving and retreating. I recognize that rhythm now. It also lives within my body.

There is a loss here that aches in unfamiliar ways; that diagnosis meant healing, and answers brought hope. Instead, every answer seems to bring more questions and thicken the fog of uncertainty. Beneath all of it runs a silent fear; a fear too raw for the dinner table, the kind I carry gently, unspoken because giving it a voice makes it feel dangerously real.

I am learning to let the fear exist without letting it take hold. Another lesson in being at peace with probabilities. It is simply choosing to stay present to what is actually happening rather than jumping to the worst-case scenario.

What is actually happening is this: I am here, and grateful for that. I'm still functioning, in the ways I can. Still showing up for my family and our animals, even if showing up looks different. The ordinary moments that once felt like background noise have become the whole of life: morning coffee, a conversation that makes me laugh, the way the sun sets behind the mountains across our fields.

A new understanding is taking root. I'm learning the in-between isn't just a waiting room; it's my life. This suspended season isn't necessarily a corridor to something better or something worse. It's where I am, and it holds moments worth loving and noticing.

The next round of testing should bring more information. Whatever it shows, I will write about it in the coming weeks. I made that commitment at the start of this series, not because processing publicly or being vulnerable is easy, but because I believe there is something important in refusing to make chronic illness invisible.

I appreciate everyone who has reached out to share their own stories. It's this connection that makes the process easier for all of us. We all need to feel seen, heard, and understood. So many of us are stuck in this in-between for so many years, and that can be a lonely place.

If you are in your own in-between, waiting on results, answers, lacking a treatment plan, or carrying an unspoken fear, I see you. This stage is difficult, and you are allowed to feel every emotion fully. The liminal space of illness is its own solitude and does not require resolution to be valid.

You are allowed to be exactly where you are, in the in-between.

Some seasons refuse to settle. In Alberta, winter keeps returning just as spring tries to arrive. My body knows that rhythm too; the in-between. Not a corridor to something better or worse. Just life, happening through every bend in the road.