Dear Diary,
Chronic illness is a strange little world to live in.
Imagine waking up feeling so terrible that someone who had never experienced those symptoms would probably be calling their doctor, heading to urgent care, or considering the emergency room.
Meanwhile, Iâm checking the time, calculating how long I have to get dressed, and wondering whether I have enough energy to make it through another workday.
Because apparently, Crohnâs Disease and Myasthenia Gravis didnât get the memo that I have responsibilities. đđ
I recently came across a statement that stopped me in my tracks. It suggested that if someone who was otherwise healthy suddenly woke up feeling the way many people with chronic illnesses feel every day, they would probably seek immediate medical attention.
And yet, here we are.
Getting dressed. Going to work. Paying bills. Taking care of our families. Making appointments. Rescheduling appointments. Fighting insurance companies. Remembering medications.
And somewhere between all of that, weâre supposed to find time to rest.
Rest? In this economy? With these diseases? Please. đ
But underneath the humor is a reality that deserves a much more serious conversation.
Somewhere along the way, many of us have become so accustomed to feeling unwell that weâve started treating suffering as normal.
And that is something worth talking about.
đ When Feeling Terrible Becomes Familiar
Living with Crohnâs Disease and Myasthenia Gravis has completely changed my understanding of what it means to feel normal.
There was a time when waking up exhausted meant I probably needed more sleep.
Now? I can sleep for hours and wake up feeling like I spent the night participating in an Olympic event I never signed up for.
There was a time when shortness of breath would have immediately alarmed me.
Now, I sometimes catch myself trying to determine whether my breathing difficulties are coming from asthma, Myasthenia Gravis, or the complications Iâve already experienced with my vocal cords and diaphragm.
Think about how unsettling that is.
Breathing is supposed to be automatic. It shouldnât require a committee meeting between my lungs, neurologist, pulmonologist, and me just to figure out whatâs happening.
Yet this is part of my reality.
Iâve experienced vocal cord paralysis. Iâve had testing confirm that my diaphragm was paralyzed. Iâve dealt with breathing difficulties that werenât always taken as seriously as I believed they should have been.
And through those experiences, Iâve learned just how complicated something as simple as breathing can become.
But hereâs the part that concerns me.
When symptoms become familiar, itâs easy to start treating them as something you simply have to manage.
You adjust your activities.
You calculate how much energy you have.
You figure out what you can accomplish before your body decides itâs had enough.
And life continues.
The emails donât stop.
The responsibilities donât disappear.
And the world certainly doesnât slow down because your body has decided to stage another rebellion.
The frightening part isnât always how bad we feel. Sometimes, itâs how accustomed weâve become to feeling that way.
đ The Symptoms Weâve Learned to Work Around
Letâs talk about what an ordinary day can look like when youâre living with chronic illness.
Fatigue that doesnât disappear after a good nightâs sleep.
Muscle weakness that turns simple activities into unexpected challenges.
Abdominal pain that makes eating feel like a gamble.
Breathing difficulties that can make physical activity feel overwhelming.
And then there are the days when several symptoms decide to show up together.
Iâve experienced days when my neck muscles became so fatigued that holding my head upright felt like a full-time job.
Days when my eyelids drooped because the muscles responsible for keeping them open had apparently clocked out early.
Days when my legs felt weak, my muscles spasmed, and ordinary movement required more effort than I wanted to admit.
And days when my digestive system reminded me that Crohnâs Disease has absolutely no respect for schedules, meetings, travel plans, or personal dignity.
Yet somehow, Iâve continued showing up.
Not because these symptoms are insignificant.
Not because Iâm unaffected.
But because living with chronic illness often means learning how to navigate life while your body is doing everything except cooperating.
And while Iâve become pretty good at adapting, I sometimes wonder whether that ability has made it harder for other people to recognize just how much Iâm dealing with.
Because when you become skilled at hiding discomfort, people can forget itâs there.
đ Functioning Doesnât Mean Feeling Well
This is something I wish more people understood.
Just because someone is functioning doesnât mean theyâre feeling well.
You can be smiling and struggling.
You can be productive and exhausted.
You can be laughing while experiencing pain.
You can look perfectly fine while your body is fighting battles nobody else can see.
And you can accomplish everything expected of you during the day, only to come home completely depleted.
People often see the finished product.
They see that you went to work.
They see that you attended the family gathering.
They see that you traveled, laughed, cooked, cleaned, or participated in whatever activity was happening.
What they donât see is the preparation beforehand.
The medications.
The careful planning.
The breaks.
The symptoms you quietly managed.
Or the recovery time afterward.
Sometimes, what looks like an ordinary day to someone else represents an extraordinary amount of effort for someone living with chronic illness.
And because we make it look manageable, people sometimes assume it must be easy.
Trust me. The performance deserves an award, but the backstage conditions are questionable. đ
The problem is that once people see you accomplish something, they may assume you can always do it.
You worked yesterday, so why canât you work today?
You went out last weekend, so why are you too exhausted now?
You looked fine earlier, so what changed?
Well, what changed is that chronic illness doesnât operate on a predictable schedule.
Myasthenia Gravis can cause fluctuating muscle weakness that worsens with activity and may improve with rest.
Crohnâs Disease can bring periods of relative stability followed by unpredictable symptoms or disease activity.
Some days, I can accomplish quite a bit.
Other days, completing the basics feels like a major achievement.
And sometimes, the very activity I managed yesterday is the reason Iâm struggling today.
Being able to do something once doesnât mean I can do it every timeâor without consequences.
I shouldnât have to prove how sick I am by reaching the point of complete exhaustion.
And neither should anyone else.
đ When Familiar Symptoms Become Dangerous
There is another side to this conversation that deserves attention.
When youâve lived with chronic illness long enough, you can become so familiar with discomfort that you start questioning whether something deserves medical attention.
You tell yourself youâve felt this before.
You assume itâs another flare.
You convince yourself you can manage it.
And sometimes, that familiarity can be dangerous.
Iâve had enough experiences with breathing difficulties, vocal cord paralysis, and diaphragm paralysis to understand that not every symptom should be dismissed as just another bad day.
Especially with Myasthenia Gravis.
MG can affect the muscles responsible for breathing and swallowing. Significant worsening of that weakness can become a life-threatening emergency.
New or worsening breathing difficulties, trouble swallowing, or rapidly progressing weakness require prompt medical evaluation. Severe breathing difficulty is an emergency.
And while Iâve learned to recognize patterns in my symptoms, that doesnât mean I can safely determine the cause of every episode on my own.
There is a difference between understanding your chronic symptoms and assuming every symptom is harmless simply because it feels familiar.
Being accustomed to suffering does not make suffering safe.
Thatâs a lesson worth remembering, even for those of us who have become experts at pushing through.
đ Sometimes, I Just Want to Be Understood
Chronic illness isnât just physically exhausting.
Itâs mentally and emotionally exhausting, too.
There is something incredibly frustrating about having to calculate how much energy you can afford to spend on ordinary activities.
Something discouraging about waking up already tired.
Something isolating about knowing the people around you may never fully understand what your body feels like.
And something deeply unfair about having to repeatedly explain why youâre exhausted when you havenât done anything that would seem particularly exhausting to someone else.
What people donât always understand is that sometimes Iâm not looking for someone to fix anything.
I know my conditions arenât going to disappear because someone offers advice, tells me to get more sleep, or suggests another supplement.
Sometimes, I simply want someone to acknowledge that what Iâm experiencing is difficult.
Not question it.
Not compare it.
Not minimize it.
Just acknowledge it.
Because being believed shouldnât be another battle added to an already exhausting day.
And yes, I know Iâve made advocacy and education part of my purpose.
But even advocates get tired.
Sometimes, the teacher needs a day off from teaching.
Sometimes, the strong person needs support.
And sometimes, I would like both of my autoimmune roommates to pack their bags and find another address.
Preferably somewhere with no forwarding information. đ
đ We Shouldnât Have to Reach Our Breaking Point to Be Believed
Hereâs what I want people to take away from this.
Someone living with chronic illness shouldnât have to collapse before their symptoms are taken seriously.
They shouldnât have to be hospitalized before their fatigue is recognized as legitimate.
They shouldnât have to look visibly sick before someone believes theyâre struggling.
And they shouldnât have to sacrifice their health just to demonstrate that theyâre capable, dependable, or strong.
Because sometimes the strongest thing a person can do is acknowledge that they cannot keep pushing.
Sometimes strength looks like canceling plans.
Sometimes it looks like asking for help.
Sometimes it looks like taking a break.
And sometimes it looks like telling the world, âNot today. My body and I are having a disagreement, and unfortunately, itâs winning.â đ
None of those things represent failure.
They represent recognizing that our bodies have limits, even when our determination doesnât.
And perhaps more importantly, they remind us that we shouldnât have to reach those limits before anyone offers understanding.
Compassion shouldnât begin at the point of crisis.
đ Final Thoughts: Surviving Shouldnât Be Mistaken for Thriving
Living with chronic illness has taught me how incredibly adaptable human beings can become.
We adjust.
We compensate.
We develop routines.
We learn to recognize symptoms, conserve energy, and work around limitations.
We become remarkably skilled at carrying on when we donât feel well.
But I donât want that ability to be mistaken for proof that everything is okay.
Because there is a difference between surviving your day and truly living it.
There is a difference between managing symptoms and being free from them.
And there is a difference between being strong enough to endure something and deserving to endure it.
I am proud of how much Iâve managed while living with Crohnâs Disease and Myasthenia Gravis.
Iâm proud of the days Iâve shown up when it would have been easier to stay in bed.
But Iâm also learning that I donât have to celebrate my ability to push through at the expense of my well-being.
I deserve rest.
I deserve understanding.
I deserve medical care that takes my concerns seriously.
And I deserve a life that isnât measured solely by how much discomfort I can tolerate.
So, the next time you see someone living with chronic illness going about their day, remember this:
What looks like an ordinary Tuesday to you may require extraordinary effort from them.
And to everyone living with a body that seems determined to test your patience, strength, and sanity on a daily basis:
I see you.
I understand.
And I hope you remember that you donât have to earn your right to rest by completely exhausting yourself first.
Because functioning isnât the same as feeling well. Surviving isnât the same as thriving. And getting used to suffering doesnât mean suffering should become the standard.
As for me?
Iâm still learning how to balance living my life with respecting what my body needs.
Some days, I get it right.
Other days, Crohnâs and MG apparently have their own agenda.
But one thing Iâm no longer willing to do is confuse my ability to endure something with an obligation to keep enduring it.
And if my body would like to cooperate with that decision, I would certainly appreciate it.
Preferably without filing an appeal first. đđđ
đľ Music Playing in My Head While Writing This
âHumanâ â Christina Perri
Because sometimes, living with chronic illness means carrying expectations that donât always leave room for our limitations.
Weâre expected to be strong, productive, resilient, and capableâeven on days when our bodies are struggling.
But weâre human.
We get tired. We have limits. We need understanding.
And sometimes, the most important reminder isnât that weâre strong enough to keep going.
Itâs that weâre allowed to stop.
đ Reflection Corner
When did we become so accustomed to feeling unwell that we started treating suffering as normal?
And why does society so often measure the strength of someone living with chronic illness by how much they can endure rather than how much support they deserve?
Just because weâve learned to live with discomfort doesnât mean we should be expected to live without understanding, compassion, or care.
You are allowed to have limits.
You are allowed to need help.
And you are allowed to prioritize your health without apologizing for it.
đ Until next time, remember: Your ability to endure is not a measure of how much you should be expected to suffer.
Living with one autoimmune disease is challenging. Living with two requires resilience. Welcome to The Dual Diagnosis Diaries, where I share the realities of navigating life with Crohnâs Disease and Myasthenia Gravisâone day, one treatment, and one lesson at a time.
Kia Lorice
Founder ⢠Author ⢠Advocate ⢠Future Wellness Coach
The Dual Diagnosis Diaries đ
Leave a Reply