Living in Liminal Space with Chronic Illness
- meaganharold23
- Jan 13
- 5 min read
Navigating uncertainty, identity shifts, and the in-between seasons of health
As Allison J. Applebaum, PhD says in her book Stand By Me, “Uncertainty defines caregiving.” It also defines the chronic illness experience.
Even when things are going well, there can be a quiet fear underneath it. The sense that your body is behaving right now, but you do not know how long that will last.
Last spring, I experienced the most intense flare of Rheumatoid Arthritis inflammation and pain I have ever had. Due to complicated medical reasons, I had to stop taking the medication that had worked for years and begin the long process of finding a new one that fit the trifecta:
It worked.
My insurance would cover it.
The side effects were manageable.
That process took a long time.
At one point I found a medication that worked well, and then the copay assistance ran out in just three months. I tried two more medications. Neither worked at all. Eventually, over the summer, I found a medication that works and is covered with copay assistance.
I have been inflammation and pain free for about five months.
It feels amazing.
And also, honestly, terrifying.
Because the memory of spring is still fresh.
Waking up every day with a joint that did not work properly.
Pain that kept me up at night.
The day I was in so much pain that I almost went to the ER and demanded morphine, just to get relief.
The anguish of sitting in urgent care and being told they could not help with the pain.
It was hell.
And while I am no longer in that hell, I know how easily I could end up back there.
Insurance can change. A medication can stop working. Side effects can appear. A flare can come out of nowhere. There is no way to know for sure.
Some days, the uncertainty feels like an elephant sitting on my chest.
So what do we do with that?
Do we let uncertainty keep us stuck in dread, unable to enjoy a period of low symptoms because we are bracing for the next crash?
The simple answer is no.
I refuse.
I will not let a pain free period pass me by unnoticed, unappreciated, or emotionally hijacked by “what if.”
The harder question is: how?
What “liminal space” really means
This is where the idea of liminal space helps.
In Stand By Me, Applebaum defines liminal space as “the time between what was and what’s next. It is a place of transition, a season of waiting, and not knowing.”
Chronic illness places you in this space over and over again.
You might be:
waiting for labs and imaging
waiting to see if a medication will kick in
waiting to see if side effects will pass
waiting to find out if a symptom is a blip or the start of something bigger
waiting for the next appointment, the next approval, the next adjustment
Even when things are stable, there can still be a sense of waiting. Waiting to see what your body does next.
There is also a quieter layer to liminal space that is harder to name.
It is the uncertainty of identity.
There is a particular grief in not knowing who you will be next month. Not because you lack a self, but because chronic illness can change your capacity overnight. The version of you who makes plans, says yes easily, moves freely, or works at full speed may or may not be available. Liminal space can feel like living without a stable map.
You are not fully who you were before. You are not yet who you will be next. And that in-between can feel deeply unsettling.
Liminal space is not just abstract uncertainty. It is the lived experience of being unable to return to what was, while also being unable to predict what is coming.
It is a hard place to live.
But it is possible to build steadiness inside it.
The first key: come back to the present moment
One of the most powerful skills in liminal space is learning how to return to the present moment.
Not in a “just think positive” way.
In a grounded way.
Because ruminating about the past and worrying about the future can quietly steal the only place you can actually live: right here.
Yes, there are lessons to learn from the past. Yes, there is reasonable planning you can do for the future.
But beyond that, living in constant mental time travel can keep your nervous system braced all day long.
Here is a simple way to spot when uncertainty is pulling you out of the present:
Your body is relatively okay, but your mind is acting like the flare is already here.
You are safe today, but your nervous system is activated.
You are trying to prevent pain by rehearsing it.
If you recognize that pattern, you are not doing anything wrong. You are trying to protect yourself.
The goal is not to shame that instinct.
The goal is to gently guide yourself back.
The second key: work with your thoughts instead of wrestling them
When worry shows up, it can help to slow down and examine it with curiosity.
Try asking:
What is the thought? Name it clearly. Example: “This medication is going to stop working.”
Is it true right now? Not “could it be true someday,” but “is it true today?” If not, your job is to return to today.
If it is not true today, can I reframe it into something more realistic? Examples:
“I do not know what will happen later. Today, my symptoms are calm.”
“My fear makes sense. And I can still let myself have this good day.”
“Uncertainty is here, but it does not get to drive the whole car.”
If it might be true in the future, is there an action I can take, or an emotion I need to feel? Sometimes the most regulating thing is practical action. Other times the most honest thing is emotional processing, without spiraling into catastrophe.
This is the balancing act: responsible planning without living in preemptive suffering.
A lived example of liminal space
Right now, I can participate in daily activities. I can walk my dog. I can exercise regularly. I can move through my day without pain calling the shots.
I try to be present in those moments.
I pay attention to how good it feels to move my body.
I notice the strength in my joints.
I let the ordinary things feel vivid again.
And yes, I also carry the knowledge that this may change.
Oddly, that knowledge can make the moment more vibrant, not less, when I do not let it tip into dread. It reminds me to be here.
The third key: prepare, then practice trust
This is the part that can sound simple, but takes real work:
Prepare as best you can.
Then practice trusting yourself to meet what comes.
If things change and I go into a flare, I am not walking in empty-handed. I have learned from the past.
I can remind myself:
I have been here before.
I survived it.
I learned new skills.
I built support systems.
I know what helps, and what does not.
That does not make flares easy. It does not erase fear.
But it shifts the story from: “If this happens, I will not be okay.” to: “If this happens, it will be hard, and I have tools, and I will not be alone.”
And then, gently, I return to now.
Because right now, today, I am here.
I went through hell, and I may again.
But right now, I am letting myself enjoy this pain free season. Not perfectly. Not constantly. But intentionally.
I am learning to live in liminal space.
Not because it is easy.
Because my life is happening here, too.
Reflection: Where is uncertainty stealing your attention lately, and what would it look like to come back to the present, just for today?
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