When people see me today, they often have no idea how dramatically my body has changed over the years.
What they see is a woman living with Crohn’s Disease and Myasthenia Gravis.
What they don’t see is the journey my body has taken to get here.
At my lowest weight, I was approximately 120 pounds.
At my highest weight, I reached nearly 280 pounds.
Today, I am around 175 pounds.
The story behind those numbers isn’t about dieting.
It isn’t about willpower.
It isn’t about fitness trends.
It’s about two autoimmune diseases that changed my body in completely different ways.
When Crohn’s Disease Changed Everything
When I was diagnosed with Crohn’s Disease in 2003, I weighed around 120 pounds.
At first, people assumed Crohn’s would make me lose weight.
Many people associate inflammatory bowel disease with being underweight because of chronic diarrhea, malabsorption, and difficulty eating.
But my journey looked very different.
Over the years, managing Crohn’s Disease often meant managing inflammation, flares, hospitalizations, surgeries, and powerful medications.
One of the most difficult realities of living with Crohn’s is that the treatments that help save your life can sometimes create new challenges.
Steroids became part of my story.
Many Crohn’s warriors know exactly what I’m talking about.
The increased appetite.
The swelling.
The moon face.
The weight gain that feels completely outside of your control.
The weight gain didn’t happen overnight.
It happened over approximately six to twelve months.
One doctor’s appointment at a time.
One steroid prescription at a time.
One Crohn’s flare at a time.
I watched my body change rapidly in ways I didn’t recognize.
120 pounds became 160.
160 became 200.
200 became 240.
Eventually, I found myself approaching 280 pounds.
And with every pound came something else.
Judgment.
Assumptions.
Comments from people who had no idea what my body had been through.
People saw the weight.
They didn’t see the disease.
They didn’t see the medications.
They didn’t see the hospital rooms.
They didn’t see the fight happening inside my body every single day.
The weight gain was difficult physically and emotionally, but at least I understood what was causing it.
Years of battling Crohn’s Disease and the treatments required to manage it had changed my body.
What I didn’t know at the time was that another autoimmune disease was about to change everything again.
The Search for Answers
Before I was diagnosed with Myasthenia Gravis, I found myself sitting in a seemingly endless cycle of doctor’s appointments trying to understand why I couldn’t breathe.
I knew something was wrong.
I knew this wasn’t simply being out of shape.
I knew this wasn’t normal.
Yet appointment after appointment, I struggled to find answers.
One appointment in particular still stands out.
I was referred to a pulmonologist in hopes of finding an explanation for my breathing difficulties.
Instead, he suggested that I see a bariatric surgeon.
In his mind, my weight was the reason I couldn’t breathe.
I remember trying to explain that as a Crohn’s Disease patient, bariatric surgery was not a realistic option for me.
More importantly, I knew what I was experiencing didn’t feel like a weight problem.
Something else was happening.
What frustrated me most wasn’t the suggestion itself.
It was the feeling that he wasn’t listening.
He saw the number on the scale and stopped looking for answers.
He saw obesity.
I was experiencing respiratory weakness.
Those are two very different things.
His inability to look beyond my weight added to an already overwhelming situation and left me feeling unheard, dismissed, and increasingly desperate for answers.
Then Myasthenia Gravis Arrived
Just when I thought I understood what it meant to live with chronic illness, Myasthenia Gravis entered my life.
And everything changed again.
MG affected my muscles.
It affected my ability to walk.
My ability to smile.
My ability to lift my arms.
My ability to swallow.
My ability to consume food and drinks safely and comfortably.
Most frightening of all, it affected my ability to breathe.
Simple tasks became exhausting.
Activities I once took for granted suddenly required tremendous effort.
There were times when eating felt like work.
Drinking required concentration.
Something most people do automatically became something I had to think about with every bite and every sip.
My body was working overtime just to accomplish basic daily functions.
As my MG symptoms worsened, maintaining my weight became increasingly difficult.
Weakness made meal preparation exhausting.
Difficulty swallowing affected how much I could eat and drink.
The energy required just to function each day often exceeded what my body was taking in.
When Myasthenia Gravis finally entered the picture, the weight that had accumulated during my Crohn’s journey began disappearing almost as quickly as it had arrived.
Unlike the weight gain, which occurred over several months, the weight loss was sudden and dramatic.
There were weeks when I lost eight to ten pounds.
Every week.
The scale dropped so quickly that it became concerning.
Friends and family noticed.
Doctors noticed.
I noticed.
280 pounds became 250.
250 became 220.
220 became 200.
And eventually, the weight loss began to plateau around 175 pounds.
The Insecurities No One Talks About
People often assume weight loss is always something to celebrate.
The reality was much more complicated.
The rapid weight loss created concerns about nutrition, muscle loss, and whether my body was getting what it needed to keep functioning.
It also created insecurities I wasn’t prepared for.
After years of adjusting to a larger body, I suddenly found myself adjusting again.
My appearance changed rapidly.
My clothes no longer fit.
My body no longer felt familiar.
And while people complimented the weight loss, very few understood that it was happening because of a disease that was stealing my strength.
The same people who once judged my weight gain were now praising my weight loss.
Neither group understood what my body was enduring.
The Truth About Weight and Chronic Illness
One of the biggest lessons I’ve learned is that weight doesn’t tell the whole story.
People often celebrate weight loss without understanding what caused it.
They assume thinner means healthier.
They assume weight gain means unhealthy choices.
But chronic illness doesn’t always follow those rules.
The same body that gained 160 pounds while fighting Crohn’s Disease later lost more than 100 pounds while fighting Myasthenia Gravis.
Neither experience was simple.
Neither experience was easy.
And neither experience can be explained by a number on a scale.
What those numbers fail to capture are the years of treatments, infusions, medications, appointments, setbacks, victories, tears, and resilience that happened in between.
Learning to Appreciate My Body Again
For a long time, I viewed my body through the lens of what it looked like.
Today, I try to view it through the lens of what it has survived.
This body has endured Crohn’s Disease for more than two decades.
This body has fought Myasthenia Gravis.
This body has survived countless procedures, treatments, and hospital visits.
This body has carried me through some of the hardest moments of my life.
And despite everything, it keeps going.
Some days are harder than others.
Some days fatigue wins.
Some days breathing is difficult.
Some days pain takes center stage.
But every day my body continues to fight.
And for that, I am grateful.
Final Thoughts
The weight I carried was never just physical.
It was emotional.
It was mental.
It was the weight of uncertainty.
The weight of chronic illness.
The weight of explaining invisible diseases to people who couldn’t see the battle.
Today, when I look at old photographs, I don’t see the woman who weighed 120 pounds.
I don’t see the woman who weighed 280 pounds.
I don’t see the woman who weighs 175 pounds today.
I see a woman who survived every version of herself.
A woman who learned that weight can change.
Diagnoses can change.
Treatments can change.
Bodies can change.
But resilience remains.
Every version of me was fighting a battle.
Every version of me deserved compassion.
Every version of me deserved grace.
And every version of me was stronger than she realized.
The weight I carried was never just measured in pounds. It was measured in treatments, tears, uncertainty, courage, and the determination to keep moving forward no matter what my body was facing.
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 Crohn’s Disease and Myasthenia Gravis—one treatment, one setback, one victory, and one lesson at a time.
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