On chronic illness, medical advocacy, and what it means to be truly heard

I was sitting in my neurologist’s office, trying to explain a sensation that didn’t make any sense.

It felt like tiny bubbles were popping inside my brain. Each one brought a sudden burst of pain, sharp enough to make me flinch, duck my head, or jerk backward in my chair. Sometimes I instinctively tried to move away from it, as though I could somehow dodge pain happening inside my own skull.

I knew how ridiculous that sounded, but I didn’t know how else to describe it.

My neurologist took it seriously. He investigated whether I might be experiencing small seizures, although testing didn’t support that explanation. Looking back, I suspect the sensations may have been related to coming off Lyrica, a medication I’d struggled with.

During that visit, he also found swelling of my optic nerves associated with increased pressure around my brain, a condition called intracranial hypertension. He prescribed medication to reduce the production of the fluid surrounding my brain and help protect my vision.

But while investigating what was happening inside my head, he began considering everything else happening in my body.

I had joint pain, recurring skin sores, exhaustion, neurological symptoms, and a growing list of medical problems. Different doctors were treating different pieces, but nobody seemed to be looking at how they might fit together.

My neurologist looked at me and asked a question I’ll never forget.

“Why isn’t someone connecting the dots? You have too many things going on for them not to be connected.”

He didn’t know exactly what was wrong with me. But he recognized that the explanations I’d been given weren’t enough.

He also contacted my primary care doctor, documenting his concerns and recommending a rheumatologist he knew personally, whose office was in the same building. He wasn’t just asking the question. He was making sure someone followed up on it.

That conversation changed the direction of my medical care.

When the Answer Is Just Lose Weight

My primary care doctor had been trying to help for years. He referred me to specialists and worked through symptoms as they appeared, but we still didn’t have a clear picture of what was happening.

One of those referrals had been to a rheumatologist in the Quad Cities.

She examined me, poking and prodding a few places, and concluded that I had fibromyalgia. She told me there wasn’t anything she could do and advised me to lose weight and switch from soda to green tea.

I left with the same unexplained symptoms I’d brought into her office.

I know weight can affect health, and fibromyalgia is a real condition that I would eventually be diagnosed with myself. But neither explains away every other symptom someone experiences.

What bothered me wasn’t simply that she mentioned my weight. It was that the investigation seemed to end there.

I was still sick, and I still didn’t know why.

After my neurologist questioned why nobody was connecting the dots, I returned to my PCP and asked if we could try someone different. We made the referral.

Two Pages of Laboratory Tests

The new rheumatologist listened to my history, asked questions, and began investigating how my symptoms might be connected.

He ordered two entire pages of laboratory tests.

I remember feeling like I’d landed in an episode of House, except the medical mystery wasn’t television entertainment. It was my life.

When the results came back, he had preliminary answers. He explained that something was affecting the connective tissues in my body, contributing to joint instability and significant arthritis. He suspected my recurring skin problems might also be connected, although he couldn’t explain how yet.

He didn’t pretend to know everything. Instead, he explained what the tests suggested, what remained uncertain, and what we could investigate next.

We would keep testing, try medications, and make adjustments until we found treatments that helped.

Initially, he diagnosed mixed connective tissue disease. As the picture became clearer, more specific diagnoses followed, including psoriasis, psoriatic arthritis, and hidradenitis suppurativa.

Something really was wrong with my body. I’d known that all along, but now someone was finding evidence and helping me understand it.

I hadn’t needed a diagnosis to make my suffering real. Having answers simply meant we finally had a direction.

That rheumatologist still treats me today.

He continues to coordinate with other specialists, including cardiology, allergy, and pain management. He requests their findings so he and my PCP can make treatment decisions with the bigger picture in mind, including how medications might interact or complicate my other conditions.

After years of trying medications that didn’t always work well together, having someone pay attention to the entire treatment plan has made a difference.

Being Treated Isn’t the Same as Being Informed

My PCP and I have known each other for years. Our relationship has grown through the necessity of managing complicated medical problems together.

He knows I have a background in healthcare. I spent nearly twenty years working in the field, including pharmacy and a psychiatric hospital, and pursued education in physical therapy. I’m comfortable with medical terminology, enjoy researching treatments, and ask plenty of questions.

Rather than being annoyed, he often joins me.

If neither of us knows something, we’ll pull up medical resources and look for answers together. He even schedules me as his last appointment of the day so we have time to talk.

One appointment showed me just how valuable that relationship had become.

I’d been experiencing episodes of crushing pain in my right shoulder, so I underwent a cardiac evaluation. I had a stress test, an echocardiogram, and a CT scan with contrast.

The tests came back normal. The cardiology office told me my heart was fine and prescribed Norvasc.

Nobody really explained why.

I walked out with a prescription but no understanding of what I was being treated for.

Later, my PCP and I pulled up the cardiologist’s notes and went through them together.

The notes described Prinzmetal angina, a condition involving temporary spasms of the coronary arteries. Those spasms can cause intense pain even when heart tests appear normal between episodes.

He explained why the medication had been prescribed and how it was supposed to help. After the dose was increased, the painful episodes became much less frequent.

The cardiology team had prescribed a treatment that helped me. But my PCP was the one who made sure I understood it.

I’ve come to trust doctors who are comfortable admitting uncertainty and willing to investigate it. Being included means I can understand my treatment instead of just following instructions.

The Things a New Doctor Doesn’t Know

I don’t particularly enjoy seeing unfamiliar doctors.

Part of it is having to explain years of complicated medical history to someone who doesn’t know me. But there’s another reason.

I’m fat. I’m missing teeth. My skin is covered in scars from years of inflammatory sores.

I know how people sometimes look at me.

I’ve worried that someone meeting me for the first time will make assumptions about drug use or my lifestyle before hearing a word of my medical history.

I’ve never used methamphetamine, but I know missing teeth and damaged skin can lead people to make that assumption.

I hate having to wonder whether a doctor is judging me before we’ve even begun talking.

The doctors who’ve treated me for years know my history. They know my education and work experience, my medical conditions, and how much effort I’ve put into understanding them.

They’ve seen me at my sickest and watched treatments fail before finding ones that helped. I don’t have to explain everything from the beginning or wonder whether they’ll take my concerns seriously.

I know my healthcare background helps me communicate with them. I understand the terminology, know how to ask questions, and can often follow complicated explanations without needing them simplified.

But sometimes I wonder what happens to patients who don’t have those advantages.

If I struggled for years to get answers despite knowing how to navigate the medical system, what happens to someone who doesn’t?

I know what it’s like to have limited choices, too. Insurance restrictions, provider shortages, transportation difficulties, and financial barriers can make finding another doctor difficult or impossible. Sometimes you’re left seeing whoever will accept your insurance, whether you feel comfortable with them or not.

And why should anyone need those advantages just to be taken seriously?

My medical knowledge isn’t what makes me worthy of being heard. Neither is the fact that I’ve never used illegal drugs or that I can discuss medications with a physician.

Every patient deserves competent, respectful care, regardless of appearance, education, weight, income, or personal history.

I shouldn’t have to prove I’m intelligent before someone takes my symptoms seriously.

Nobody should.

More Than an Appointment

Every twelve weeks, I drive an hour and forty minutes to see my neurologist for Botox injections that have dramatically improved my chronic migraines.

His staff know me when I walk in. They greet me by name, know my wife and children, and save me a late-morning appointment because they understand how far I travel.

Years ago, I made him a landscape in my own artistic style to thank him for what he’d done.

He had it framed, and it hangs on the wall of his office.

I’ve told him that I believe he saved my life.

I mean it.

Not because he diagnosed every condition or knew exactly which treatments I would eventually need. He didn’t. But he recognized that there was more happening than anyone had figured out, and he made sure someone kept investigating.

I still have chronic illnesses, and there are symptoms we haven’t completely resolved. There probably always will be. What matters is knowing I can bring my doctors a concern without having to prove, once again, that it’s worth investigating.

I’ve never needed my doctors to know everything. I’ve needed them to care enough to keep looking when they don’t.