CHRONIC ILLNESSES & DOCTORS WITHOUT ANSWERS

[Spoiler alert: It’s not hysteria!]

Living in a fog

You live your life in brain fog. Perhaps even “brain swamp.” You’re overwhelmed, exhausted, and struggling just to get through each day. Even when you can get a decent night’s sleep, you may wake up feeling drained, as if there’s a slow leak in your brain. Sometimes your mind just switches off, and you realize you’ve been staring blankly at your computer screen for twenty minutes. Some days your whole body hurts, or you can’t eat, and you’re not sure why.

You know you didn’t always feel like this, but it’s hard to explain what’s wrong. Or maybe your symptoms just sound crazy when you say them out loud. Maybe you’ve told friends or family, but they don’t really understand… or don’t really believe you.  You may have already tried changing your diet, exercising, or meditating, but nothing seems to help in the long term.

Shouting into the void

Maybe you’ve even been to a doctor or two (or twelve), but they brushed you off after your blood work came back “normal,” saying “everyone feels tired.”  Or maybe they recommended you lose some weight, like that’s some sort of panacea. Or maybe they labelled you with a mental health disorder just for asking questions (and/or having a vagina).  Maybe they blamed all your symptoms on stress, your job, or your family, but offered no real solutions.

If you’re lucky (or less unlucky?), you may have already received one or more diagnoses that adequately explain at least some of your symptoms, like Long COVID, POTS, fibromyalgia, ME/CFS, ADHD, or Autism. If you’re even luckier, you may have access to treatments that may help manage some of your worst symptoms. But now, every time something changes, it’s vaguely blamed on your condition, and doctors seldom bother to investigate further. Every new symptom is treated as another piece of your “new normal,” and doctors may start to overlook even obvious, treatable conditions amidst the “noise” of your chronic condition (this is called “diagnostic overshadowing”).

Medical neglect and gaslighting

If you’re less lucky, you may have collected other, less helpful diagnoses during your quest. When a doctor can’t figure out what’s wrong, they’re unlikely to believe “my medical education left me unprepared for this patient’s needs, and I need to work to catch up.” Instead, they’re much more likely to embrace the more convenient conclusion that “this patient’s symptoms don’t fit any common conditions I know of, so they’re probably made up.”

This commonplace cognitive bias leads many doctors to casually slap on a label like “Anxiety,” “Borderline Personality Disorder,” or even “Somatic Symptom Disorder,” often without bothering to even read the diagnostic criteria first, much less to consider the detrimental impact such diagnoses often have on future medical care. I cannot tell you how many clients have been sent to me for “anxiety” or “somatic symptoms,” who later turned out to have serious medical issues that doctors hadn’t even considered, much less ruled out.

Or maybe you’ve given up on the medical field entirely at this point, and are now skipping even your yearly checkups, just to avoid the feeling of hopelessness you get every time you shout into the void.

You’re not alone

If this is you, I understand. I went decades without a diagnosis or treatment for a life-altering genetic disorder, and endured medical neglect, misdiagnosis, gaslighting, and worse at the hands of medical professionals I trusted.  It made me question my own sanity. I wondered if I would ever get any answers, much less any hope of effective treatment.  I felt lost and alone, but you don’t have to. Why?

I believe you.

It’s funny how powerful those three little words can be.  I can still remember how it felt the first time I was truly believed about my illness.  Of all the dozens of medical professionals I saw over the years, it was actually a therapist who first took me seriously.  Instead of blaming my symptoms on anxiety, depression, or stress (and moving on with her day) she had the gall to question my doctors’ assumptions, and to ask one simple question that led directly to my first accurate diagnosis.  She believed me, and it changed my life forever.

I can’t promise you’ll find all the answers you’re looking for, but I can support you on your quest.  Together we can work on ways to advocate with your medical providers, manage your symptoms, and reclaim space for what’s most important to you.  I know how hard it is to trust anyone at this point, but if you have any trust left in you, please consider trusting me.