When your medical history reads more like a plot twist than a textbook.
đ Dear Diary,
There are certain things you expect to hear when you visit the doctor.
âYour blood pressure looks good.â
âYour labs are improving.â
âEverything appears normal.â
And then thereâs the phrase that seems to follow me around like an unwanted subscription:
âWell, thatâs not typical.â
Excuse me, Doc. Have we met? đ
Because apparently, my body missed the orientation where everyone was supposed to learn how to develop symptoms, respond to treatments, and follow established medical guidelines.
Instead, my body heard the word rare and decided that sounded like an invitation.
Doctor: âThatâs not typical.â
My body: âChallenge accepted.â
Me: âCan we PLEASE stop accepting challenges nobody signed us up for?â đđ
Welcome to another episode of The Dual Diagnosis Diaries, where the symptoms are unpredictable, the medical mysteries are plentiful, and the main character would really appreciate a boring chapter for once.
đŠ When Your Body Refuses to Follow the Textbook
Living with Crohnâs Disease since 2003 has taught me that chronic illness doesnât always follow a predictable pattern.
Then Myasthenia Gravis (MG) entered the picture in 2023 and apparently decided Crohnâs wasnât doing enough to keep things interesting.
Now I have two autoimmune roommates who refuse to communicate, respect boundaries, or follow house rules.
Crohnâs handles the gastrointestinal chaos.
MG specializes in muscle weakness, fatigue, and occasionally making breathing feel like an Olympic event.
And me?
Iâm the exhausted landlord trying to manage two tenants who are constantly violating their lease agreements. đ
But hereâs what makes this journey especially frustrating.
Sometimes my symptoms donât fit what doctors expect to see.
Sometimes the tests donât immediately explain what Iâm experiencing.
And sometimes, instead of answers, I get those four familiar words:
âThatâs not typical.â
Well, neither is having two autoimmune diseases competing for Employee of the Month, but here we are.
đ©ș When âNot Typicalâ Becomes a Roadblock
Hereâs something Iâve learned after more than two decades of living with chronic illness:
Just because something isnât typical doesnât mean it isnât happening.
Iâve experienced symptoms that required multiple appointments, different specialists, additional testing, and more self-advocacy than anyone should have to provide just to be heard.
Take my breathing difficulties, for example.
When I began experiencing significant respiratory problems in December 2023, I knew something was wrong.
Not just a little wrong.
Something was seriously wrong.
I was struggling to breathe, and the explanations being offered didnât seem to account for everything I was experiencing.
Asthma.
Sleep apnea.
Other respiratory conditions.
And while those conditions deserved consideration, I knew my breathing difficulties felt different.
I repeatedly explained what was happening, described my symptoms, and tried to communicate just how frightening the experience had become.
But there were moments when I felt like I was doing more convincing than receiving answers.
Eventually, after continued evaluation and a referral to an ENT, we discovered left vocal cord paresis, a condition involving weakness or reduced movement of the vocal cord.
Subsequent testing also identified diaphragmatic paralysis.
Suddenly, there were important pieces of the medical puzzle that hadnât been clear before.
These findings helped explain why my breathing difficulties were more complicated than initially understood. They also reinforced why looking beyond the most familiar explanations was so important.
And while I was relieved to have more answers, I couldnât help feeling frustrated about everything it took to get there.
Because thereâs something incredibly lonely about knowing your body is struggling while trying to find the words that will make someone else understand.
Sometimes I donât need an immediate diagnosis.
I just need to know someone believes me enough to keep looking.
I understand that medicine isnât always straightforward. Symptoms overlap, conditions coexist, and diagnoses sometimes take time.
But when youâre the person struggling to breathe, waiting for answers isnât just inconvenient.
Itâs frightening.
And when youâre already living with chronic fatigue and muscle weakness, you donât exactly have extra energy sitting around for medical debates.
Yet somehow, we find it.
Because sometimes advocating for yourself means becoming the squeaky wheel, even when youâre too tired to squeak.
đ âThatâs not typicalâ should be the beginning of a conversation, not the end of one.
đ Rare Doesnât Mean Impossible
One of the most frustrating aspects of living with complex chronic illnesses is how easily the word rare can become a reason to hesitate.
Rare symptoms.
Unusual complications.
Unexpected treatment responses.
Atypical presentations.
But hereâs the thing.
Medical textbooks describe patterns. They help doctors recognize conditions, evaluate possibilities, and make informed decisions.
They are incredibly valuable.
But patients are individuals, not textbook illustrations.
Two people can have the same diagnosis and experience it very differently.
For example, MG is a neuromuscular autoimmune disease that disrupts communication between nerves and muscles, causing weakness that often worsens with activity and improves with rest.
Some individuals primarily experience drooping eyelids or double vision.
Others experience difficulty speaking, swallowing, holding up their heads, or breathing.
And some experience a combination of symptoms that can fluctuate significantly.
Crohnâs Disease is equally unpredictable.
One person may experience abdominal pain and diarrhea.
Another may develop strictures, fistulas, severe inflammation, or complications requiring surgery.
Some people experience long periods of remission, while others struggle with persistent symptoms.
Neither disease comes with a universal instruction manual.
And then there are people like me.
Apparently, I collect medical complications like theyâre limited-edition Disney merchandise.
Except I didnât ask for this collection, thereâs no return policy, and the customer service department is permanently closed. đđ
The important thing to remember is that an unusual symptom isnât automatically caused by an existing diagnosis.
Sometimes itâs a complication.
Sometimes itâs an unrelated condition.
Sometimes it requires a completely different specialist to recognize whatâs happening.
Thatâs why thorough evaluation matters.
Because uncommon doesnât mean impossible, and unexpected doesnât mean imaginary.
đŠ The Emotional Cost of Being the Exception
I joke about my body being an overachiever, but thereâs a serious side to constantly feeling like the patient whose symptoms donât follow expectations.
It can make you question yourself.
Am I explaining this correctly?
Am I overreacting?
Should I be more patient?
Is there something Iâm missing?
And when youâre sitting across from a medical professional who seems uncertain about what youâre experiencing, that uncertainty can become frightening.
Especially when the symptoms involve something as essential as breathing.
There have been moments when Iâve left appointments feeling more frustrated than when I arrived.
Not necessarily because I didnât receive an answer.
But because I didnât feel heard.
And thereâs a difference.
I can accept that a doctor may not immediately know whatâs wrong.
I can accept that additional testing may be necessary.
I can even accept that some questions may remain unanswered.
What I struggle to accept is feeling like my concerns are being dismissed simply because they donât fit the expected presentation.
Iâve learned that being persistent doesnât mean Iâm questioning every doctorâs knowledge or expertise.
It means Iâm contributing something equally important to the conversation.
My lived experience.
Doctors bring medical training, diagnostic knowledge, and clinical expertise.
I bring the experience of living inside this body every single day.
I know what my normal feels like.
And when that normal changes, I notice.
The best healthcare happens when both perspectives are respected.
I donât expect every doctor to have an immediate answer.
I donât expect medicine to be perfect.
But I do expect curiosity, communication, and a willingness to investigate when something doesnât add up.
Because being medically complicated shouldnât mean becoming medically invisible.
đ My Body Has Main Character Syndrome
At this point, Iâm convinced my immune system has a flair for drama.
It cannot simply have a symptom.
Oh no.
It needs a supporting cast, a complicated storyline, three specialist referrals, and a surprise ending.
Crohnâs: âI think Iâll cause a little trouble today.â
MG: âHold my Mestinon.â
Me: âCan neither of you hold anything? Iâd like ONE peaceful day!â
And somewhere in the background, my body is preparing its next unexpected plot twist.
Meanwhile, Iâm just trying to work, enjoy my family, bake something delicious, spend time at the beach, and live a reasonably normal life.
Apparently, thatâs asking a lot from an immune system that believes every day should be a season finale.
But hereâs the thing about humor.
It doesnât mean the situation isnât serious.
It doesnât mean Iâm not frustrated, exhausted, or sometimes scared.
It means Iâve learned that if Iâm going to live with this much unpredictability, I might as well find opportunities to laugh along the way.
Because crying over every unexpected symptom would leave me permanently dehydrated.
And Crohnâs already gives me enough reasons to worry about hydration. đ
Honestly, if my autoimmune roommates insist on creating chaos, the least they could do is start paying rent.
Preferably on time.
And without another medical bill attached. đđ
đȘđœ Advocacy Is Not Being Difficult
One of the most important lessons chronic illness has taught me is that advocating for myself isnât optional.
Itâs necessary.
And I want anyone living with chronic illness to understand something.
You are allowed to ask questions.
You are allowed to request clarification when something doesnât make sense.
You are allowed to explain that a symptom feels different from what you normally experience.
You are allowed to ask what other possibilities should be considered.
And when your concerns remain unresolved, you are allowed to seek another medical opinion.
None of those things makes you a difficult patient.
It makes you an active participant in your healthcare.
Iâve learned that I can respect medical expertise while still trusting myself enough to say:
âSomething isnât right, and I need us to keep looking.â
That doesnât mean I always know the cause of my symptoms.
It doesnât mean my interpretation is automatically correct.
It means I recognize when something has changed, and I deserve an appropriate evaluation.
Being your own advocate isnât about proving your doctor wrong. Itâs about working together to understand whatâs happening to your body.
Sometimes that means asking uncomfortable questions.
Sometimes it means requesting additional testing.
And sometimes it means seeking another perspective when the answers still donât make sense.
Because the goal isnât to win an argument.
The goal is to get answers, appropriate treatment, and the opportunity to live as well as possible.
đ” Music PlayingâŠ
âUnwrittenâ â Natasha Bedingfield đ¶
Because apparently, my body has decided to write its own medical textbook, and nobody thought to give me editorial approval.
But beyond the humor, this song reminds me that my story is still unfolding.
My diagnoses are part of my life, but they donât get to write every chapter.
Some chapters are difficult.
Some are unpredictable.
And some contain plot twists I would have happily declined.
But there are still pages waiting to be written that have absolutely nothing to do with Crohnâs, MG, medical appointments, or treatments.
And those are the chapters Iâm determined to keep living.
đ Reflection Corner
Living with Crohnâs and MG has taught me that being different isnât always something to celebrate.
Sometimes itâs exhausting.
Sometimes itâs frightening.
Sometimes I would give just about anything to be the boring patient whose symptoms follow the expected pattern and whose appointments end with absolutely nothing interesting to report.
But Iâve also learned something important.
My experiences deserve to be heard, even when they arenât typical.
I donât need every symptom to fit neatly into a medical textbook to know that what Iâm experiencing matters.
And I donât need to apologize for asking questions, requesting answers, or refusing to ignore changes in my health.
I can be grateful for the medical professionals who have helped me while acknowledging the frustration of the times I struggled to be heard.
Both things can be true.
So the next time a doctor tells me, âThatâs not typical,â I hope the conversation continues with:
âLetâs figure out why.â
Because thatâs the kind of healthcare people living with complex chronic illnesses deserve.
And as for my body?
Sweetheart, weâve established that youâre unique.
You donât have to keep proving it.
Seriously.
Weâre good.
No more auditions for Americaâs Next Medical Mystery. đđ
đ Letâs Talk About It
Have you ever described a symptom to a doctor only to hear that it wasnât typical for your diagnosis?
Did you eventually get answers, or are you still trying to solve your own medical mystery?
Share your experience in the comments.
Your story may help someone else feel less alone and more confident advocating for themselves.
Because sometimes the most powerful words we can hear are:
âYouâre not the only one.â
đ Until Next TimeâŠ
Living with one autoimmune disease is challenging. Living with two requires resilience, patience, humor, and a willingness to advocate for yourself when the answers arenât easy.
Here at The Dual Diagnosis Diaries, we share the realities of navigating Crohnâs Disease, Myasthenia Gravis, and life with chronic illnessâone symptom, one treatment, one unexpected plot twist, and one lesson at a time.
Our experiences may not always be typical, but they are real, they matter, and they deserve to be heard.
Stay informed. Stay empowered. Keep advocating. And never let the word âatypicalâ silence your voice. đđŠ
With love, strength, and a little medical sarcasm,
Kia Lorice
Founder âą Author âą Advocate âą Future Wellness Coach
The Dual Diagnosis Diaries
https://thedualdiagnosisdiaries.com
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