Two people can share the same diagnosis and live two completely different realities. Having the same disease does not mean having the same journey.
💜 Dear Diary,
One of the most important lessons I have learned while living with Crohn’s Disease and Myasthenia Gravis (MG) is that a diagnosis is not a blueprint.
Two people can have the same disease, take the same medication, and receive care from the same specialist yet have completely different experiences.
One person may experience mild symptoms, while another struggles with complications that significantly affect their quality of life. One may respond beautifully to a particular treatment, while another experiences little improvement or cannot tolerate it.
And guess what? Neither person’s experience is any less valid.
Yet, somewhere along the way, we have developed this idea that people who share a diagnosis should somehow share the same medical journey.
That could not be further from the truth.
As someone living with two autoimmune diseases, I have learned that even my own body does not respond the same way from one day to the next.
And if I cannot predict what my two roommates will do tomorrow, how could I possibly expect someone else’s experience to mirror mine? 😂
🦋 The Same Disease Does Not Mean the Same Symptoms
Let’s talk about Myasthenia Gravis.
MG is a rare autoimmune neuromuscular disease that disrupts communication between nerves and muscles, causing fluctuating muscle weakness.
However, not everyone with MG experiences the disease in the same way.
Some people primarily experience ocular symptoms, such as drooping eyelids or double vision. Others develop generalized muscle weakness that affects their arms, legs, neck, swallowing, speech, or breathing.
Even among people with generalized MG, the severity and combination of symptoms can vary considerably.
Then there are different antibody subtypes, including acetylcholine receptor (AChR) antibody-positive MG, muscle-specific kinase (MuSK) antibody-positive MG, and other forms of the disease.
These distinctions can influence clinical presentation and treatment decisions.
I live with MuSK-positive MG, and my experience has been anything but textbook.
My journey has included respiratory and bulbar involvement, vocal cord complications, diaphragm paralysis, and periods when something as simple as breathing has become an exhausting task.
But someone else living with MG may never experience those particular complications.
That does not make their MG less real, just as my complications do not make my diagnosis more legitimate.
We share a disease, not necessarily the same symptoms.
And that distinction matters.
💜 Even Our Treatments Can Tell Different Stories
One of the most frustrating misconceptions surrounding rare diseases is the belief that if a treatment works for one person, it should work for everyone.
I wish it were that simple.
With MG, treatment options may include medications that improve neuromuscular communication, immunosuppressive therapies, intravenous immunoglobulin (IVIG), plasma exchange, and newer targeted treatments.
But choosing an appropriate treatment depends on several factors, including antibody status, disease severity, symptoms, other medical conditions, and individual response.
For me, Rystiggo (rozanolixizumab) has been an important part of my treatment journey.
But my experience with Rystiggo is exactly that: my experience.
Another person may respond differently, require a different treatment schedule, experience side effects, or find that an entirely different therapy is more appropriate.
And sometimes, a treatment that previously worked may need to be reassessed as a person’s condition changes.
This is why comparing treatment experiences can be helpful, but using someone else’s results as a measure of our own progress can be misleading.
Sharing information is valuable. Sharing experiences builds community.
But treatment decisions should be individualized and made with the healthcare professionals who understand each person’s medical history.
What works for one person may not work for another, and that does not mean either person has failed.
🌻 Crohn’s Disease Has Taught Me the Same Lesson
My other roommate, Crohn’s Disease, is equally committed to keeping life interesting. 🙄😂
Crohn’s is a chronic inflammatory bowel disease that can affect any part of the gastrointestinal tract, from the mouth to the anus.
For some people, the disease primarily affects the small intestine. For others, it involves the colon, multiple areas of the digestive tract, or complications outside the intestines.
Some people experience long periods of remission. Others struggle with persistent inflammation, recurrent flares, strictures, fistulas, or the need for surgery.
Even symptoms can differ dramatically.
One person may experience frequent diarrhea, while another struggles primarily with abdominal pain, constipation, fatigue, or nutritional deficiencies.
And just because someone is not experiencing the symptoms commonly associated with Crohn’s does not mean their disease is inactive.
I was diagnosed with Crohn’s in 2003, and my journey has included severe anemia, kidney stones, gallbladder removal, and the ongoing unpredictability of living with a chronic inflammatory disease.
But those experiences are not universal.
Just as with MG, there is no single Crohn’s experience.
And when you live with both diseases, the challenge of understanding which condition is responsible for which symptom adds an entirely different layer of complexity.
Sometimes, I feel like I need a referee just to figure out which roommate is causing the latest disturbance. 😂
🦋 Why Comparing Our Journeys Can Be Harmful
There is a difference between learning from someone else’s experience and measuring your own experience against theirs.
I have seen conversations in chronic illness communities where someone shares a symptom, complication, or treatment experience, only to be met with responses such as:
- “I have the same disease, and that has never happened to me.”
- “My medication worked immediately, so yours should too.”
- “I don’t have those symptoms. Are you sure they’re related?”
- “My disease isn’t that severe, so I don’t understand why yours is.”
Sometimes these comments come from genuine curiosity. Other times, they reflect a misunderstanding of how differently chronic illnesses can affect people.
Regardless of the intention, they can leave someone feeling dismissed, isolated, or questioning their own experience.
And for those of us who have already spent countless hours explaining our symptoms, advocating for appropriate care, and trying to be heard, that dismissal can be particularly discouraging.
Your experience does not have to mirror someone else’s to be legitimate.
You do not have to experience every symptom associated with a disease to have it.
You do not have to respond to the same medication as someone else.
And you certainly do not have to prove the severity of your illness by comparing it with another person’s medical history.
There is room for all of our experiences.
💜 Rare Disease Advocacy Requires Recognizing Our Differences
One of the reasons I created The Dual Diagnosis Diaries was to share my experiences while helping others better understand the realities of living with chronic and rare diseases.
But advocacy is not about convincing everyone that their experience should look like mine.
It is about creating space for people whose experiences may be entirely different.
When we share our stories, we help others recognize symptoms they may not have understood, discover questions to discuss with their healthcare providers, and feel less isolated.
We also help challenge the misconception that a diagnosis comes with a predictable set of symptoms, limitations, and outcomes.
However, responsible advocacy requires us to recognize the distinction between personal experience and medical evidence.
My story may help someone feel seen, but it should never be presented as the standard by which everyone else’s disease is measured.
And someone else’s story should never be used to invalidate mine.
We can learn from one another without assuming that our experiences are interchangeable.
That is what meaningful advocacy looks like.
🌻 The Lesson My Two Roommates Keep Teaching Me
Living with Crohn’s Disease and MG has taught me that even sharing a diagnosis with myself does not guarantee consistency.
I can wake up one morning feeling relatively well and find myself struggling with symptoms later that afternoon.
A treatment may help manage one aspect of my disease while other symptoms require additional attention.
And having a good day does not erase the reality of the difficult days that came before it.
If my own journey can change so dramatically, it makes absolutely no sense to expect another person’s journey to follow the same path.
I have also learned that compassion does not require identical experiences.
I do not have to understand every symptom someone else experiences to believe them.
I do not have to share their treatment history to respect their decisions.
And I do not have to experience the same degree of disability to recognize the challenges they face.
Sometimes, the most powerful thing we can offer another person is not advice, comparison, or an explanation.
Sometimes, it is simply listening.
Because at the end of the day, we are not competing to see who has the most symptoms, the most complicated treatment plan, or the most difficult diagnosis.
We are all trying to navigate our own version of life with chronic illness.
And trust me, there are no trophies for having the most unruly roommates. 😂💜
🎵 Music Playing: “Unwritten” — Natasha Bedingfield
Every person’s journey is still being written, and no two stories have to follow the same script.
This song is a reminder that our lives are not defined solely by our diagnoses or by what someone else’s journey looks like.
Our experiences are individual, our paths are constantly evolving, and every chapter belongs to us.
💭 Reflection Corner
Living with a rare disease has taught me that a diagnosis may give a condition a name, but it does not tell the entire story of the person living with it.
We may share medical terminology, treatment options, and support communities, but our experiences remain uniquely our own.
Instead of comparing our journeys, we should be celebrating the courage it takes to navigate them.
Instead of questioning why someone else’s disease looks different, we should be recognizing that chronic illness is not one-size-fits-all.
And instead of expecting everyone to respond to treatment in the same way, we should be advocating for individualized care.
Same diagnosis. Different symptoms. Different treatments. Different journeys. Equally deserving of compassion, understanding, and quality care.
Our stories do not have to be identical to connect us.
Sometimes, our differences are precisely what make sharing them so important.
💬 Let’s Talk About It
Have you ever felt that your experience with a chronic or rare disease was dismissed because it differed from someone else’s?
Have you discovered that a treatment that worked for another person did not work for you?
Share your experience in the comments. Your story may be exactly what someone else needs to hear today.
Let’s build a community where differences are respected, experiences are validated, and no one feels pressured to prove that their illness is real.
💜 Because awareness begins with education, but advocacy begins with understanding.
💜 Until Next Time…
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 day, one treatment, and one lesson at a time.
Kia Lorice 💜🦋
Founder • Author • Advocate • Future Wellness Coach
The Dual Diagnosis Diaries
🌐 thedualdiagnosisdiaries.com
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