The Invisible Work of Patient Advocacy: A Therapist's Journey Through Chronic Illness

I've spent years as a Registered Clinical Counsellor specializing in chronic illness and trauma. But I didn't become a therapist and then become a patient. My chronic illnesses—fibromyalgia, chronic fatigue, and trigeminal autonomic cephalgia—emerged when I was around 18, during my university years. I'm 35 now. That's over fifteen years of living in a body that doesn't work the way it's supposed to.

I became a therapist because of my chronic illness experience, not despite it. The combination of early trauma and then developing multiple chronic conditions shaped my path. I understood the frameworks because I'd lived them first. I could name the stages of adjustment to chronic illness because I'd been through them multiple times with different conditions. I knew about the neurobiology of chronic pain because I'd researched my own body's dysfunction. I taught clients about pacing, boundaries, and self-compassion because those were the tools that had kept me functioning through university, graduate school, and building my practice.

Then my trigeminal autonomic cephalgia escalated into severe SUNA—Short-lasting Unilateral Neuralgiform headache attacks—and everything I thought I knew got tested in ways fifteen years of chronic illness experience hadn't prepared me for. The difference between managing chronic conditions and facing intractable daily pain with treatment failure is vast.

I'd been advocating for myself through medical systems for over fifteen years. I'd learned to manage fibromyalgia flares, chronic fatigue crashes, and headache episodes. I'd navigated misdiagnoses, gaslighting doctors, and accessibility challenges while getting through university and graduate school. I thought I knew how to be a patient.

But this was different.

Patient advocacy at this scale wasn't just researching conditions, attending appointments, making sure your tests get to the right doctor, taking notes, bringing in questions to each appointment, or prepping for gaslighting and managing emotions after each doctor visit with self-care anymore. It became hours of researching international treatments and emailing specialists who could help. Creating a database for myself to track specialists, cross off the ones who responded, document what they said. Organizing information my foggy brain could barely process because I was in 9/10 daily pain while doing this work. It was tracking down my own medical records because I found out they didn't transfer automatically between providers—discovering my GP hadn't received my file for two years. It was calling specialists' offices to verify they would actually perform the procedures that I'd been referred to them for, only to find out they don't. It was showing up to a lab for blood work they don't even do—after calling ahead to confirm they did. It was discovering that the MSP form for out-of-country care couldn't be signed because I couldn't get access to the specialist who would need to sign it. It was becoming my own international medical coordinator because the local system had run out of options for me and left me on a six-year waitlist for multiple specialists. I needed to create my own next treatment plan or I'd sit in 9/10 pain in waitlist purgatory indefinitely.

All the while, chronic conditions don't get frozen dinners, gifts, treats, coffee, or support like acute illness does. You're alone. You don't get cards of encouragement. It's all done in isolation. Friend groups you lost long ago.

This work wasn't collaboration with a functioning system. This was compensating for a broken one. Every database I created, every email I sent, every specialist I tracked down—that was work the system should have done but didn't. Patient advocacy at this level isn't about being an empowered participant in your care. It's about becoming your own medical coordinator because the system abandoned you. The burden falls entirely on the patient to fix what the system failed to provide.

And with each new specialist came the expectation to try multiple medications. Each one wanted me to trial their preferred treatments, even when previous specialists had already tried similar approaches. I became a guinea pig—cycling through medications, suffering withdrawal symptoms between trials, managing side effects, all while trying to function in daily life. Some of these trials happened during graduate school with toddlers. Raising kids during medication withdrawals. Working with clients while adjusting to new drugs. Managing a business while my body adapted to yet another treatment that probably wouldn't work. The weight of these trials—the physical toll, the hope that maybe this one would help, the inevitable disappointment, the withdrawal symptoms—became another layer of burden on top of everything else.

And if I declined a medication—even one I'd already tried and failed, even one I'd had allergic reactions to—I risked being labeled "non-compliant" in my file or having the doctor refuse to offer other options. I was asked multiple times to try medications I was allergic to. The choice became: accept treatment I knew would harm me, or risk losing access to care. You feel like an experiment, not a person.

It's doing all of this while still being a mother, a partner, a professional. While your body is failing and your nervous system is screaming. While people who love you don't fully understand what you're going through.

When Support Helps—and When It Fails

Here's what surprised me most: the isolation.

Not because I lacked people who cared. My husband was incredible. But he received support in ways I didn't. People would ask him "How is Elysia doing?" and express concern for what he was going through. Casseroles appeared. Offers to help with the kids.

Meanwhile, people would tell me about their cousin's headaches that got better with a dietary change. Or suggest I try yoga. Or say "but you're managing, so it can't be that bad."

The minimization was crushing. When you look fine on the outside but are dying on the inside, when you're managing cardiac complications while researching international specialists and raising kids and running a business—it's incomprehensible to people whose worst medical experience was waiting three hours at a walk-in clinic.

What hurt most was that even friends and family with chronic illnesses didn't understand this severity. They'd suggest I just medicate it—when I'd exhausted medication options, had allergic reactions to most treatments, and the one that worked was pulled due to cardiac complications. They'd compare it to living with their past injury or other manageable conditions, asking why I couldn't just adapt and live with SUNA like they lived with their pain. They'd gaslight me into thinking "it can't really be that bad, you're being dramatic."

Even within the chronic illness community, there's a hierarchy of comprehension. People who manage their conditions with medication or lifestyle changes couldn't grasp intractable 9/10 daily pain with no treatment options left. The comparisons felt absurd—neurological pain attacks aren't comparable to orthopedic issues, but explaining that made me sound like I was claiming my suffering was "worse" when I just needed them to understand it was different. And untreatable.

Some people meant well but invalidated the severity without realizing it. Some asked intrusive questions about my medical decisions. Some offered unsolicited advice about treatments I'd already tried. Some simply didn't know what to say, so they said nothing and the silence was deafening.

The difference between support offered to caregivers versus patients themselves is stark. We recognize the burden on partners and family. We bring them meals and ask how they're holding up. But the person in the center of the crisis? We expect them to stay positive, educate us about their condition, and reassure us that they're coping fine.

And there's an even starker difference between support for acute versus chronic illness. When someone has surgery or cancer treatment or a temporary health crisis, communities rally. Frozen dinners appear. Gift baskets. Coffee drop-offs. Cards of encouragement. Offers of practical help.

Chronic illness gets none of that. The crisis is too long, too invisible, too exhausting for people to sustain support. Friend groups? Lost long ago, years into this journey. So you do the hardest medical advocacy work of your life—coordinating international treatment, managing multiple crises, researching while in severe pain—completely alone. No casseroles. No cards. No one checking in. Just isolation and the expectation that you're "used to it by now."

The Weight of Past Medical Trauma

This is something I know both professionally and understand viscerally: many people with chronic health conditions have trauma from past medical experiences and lived relational experiences that affects their ability to seek help and advocate for themselves.

Maybe you've been dismissed by doctors who said your symptoms were anxiety. Maybe you've been told you're exaggerating or seeking attention. Maybe you had childhood incidence, or maybe you've had your pain undertreated because someone decided you were "drug-seeking." Maybe you've been blamed for your illness—told you caused it with stress or poor lifestyle choices.

With a rare neurological pain condition and cardiac complications, I faced this at nearly every appointment. Every time I saw a new doctor, I could see the assumption forming: drug-seeking or psychiatric case. Severe pain without obvious imaging findings? Must be exaggerating or looking for opioids. Cardiac symptoms with normal ECG? Must be anxiety. The fatigue of proving legitimacy at every single appointment—bringing research papers, documented symptoms, specialist letters—just to be taken seriously enough to receive basic care.

Here's what's crucial to understand: trauma responses in chronic illness patients look like PTSD, anxiety, and depression—not because the physical symptoms have a psychosomatic cause, but because navigating the medical system is genuinely traumatic. When doctors see anxiety or depression in chronic pain patients, they often assume the mental health issues are causing the physical symptoms. Yet, the reality is often reversed: the anxiety and depression are trauma responses from years of dismissal, gaslighting, and inadequate care. The medical system itself is traumatizing.

When you've been minimized, dismissed, or not believed enough times, asking for help becomes terrifying. And adding to that most chronic illness patients are whats now called Type C Personality or people pleasers. They’ve often been parentified in childhood and were the therapist to friends and family. And so it’s more in their nature to start to wonder if maybe everyone’s right. Maybe you are exaggerating. Maybe you should just try harder to cope.

This trauma shapes how you interact with the medical system. You over-prepare for appointments to seem "credible." You downplay symptoms because you're afraid of being seen as dramatic. You don't call when something concerning happens because you don't want to be a burden to others. You accept inadequate care because you're grateful anyone is willing to help at all.

And you learn to mask. My therapist once told me I'm an excellent masker—a skill developed from years as a patient learning the impossible balance. You can't show too much emotion in the ER or you'll get a psychiatric evaluation instead of treatment for your physical symptoms. You can't show too little emotion or you'll be dismissed as not serious enough and receive inadequate care. So you walk a tightrope, constantly monitoring and modulating your emotional presentation, trying to appease a system that doesn't actually care. You need to catch the doctor on a good day to get a good outcome—your care quality depends on their mood, not your medical needs. This constant performance while in severe pain is exhausting invisible labor.

On rare occasions, you meet a doctor who's an outlier—someone who treats your pain as real, believes you without excessive proof, and actually helps. This feels like meeting a unicorn you had no idea existed. For a brief moment, you have hope. Then they refer you to the next step in care, and you get that sinking feeling because you know what's coming: you'll fall through the cracks again. Back on the waitlist wheel, losing the progress and trust you'd built. The system can't maintain continuity of good care because it’s overwhelmed. And each handoff is a reset, and most often, a loss.

Medical trauma is real trauma. It affects your nervous system, your sense of safety, your ability to trust. And it compounds when you need to advocate for yourself while already in crisis.

The Impossible Task: Functioning While Falling Apart

Every morning, I woke up in 9/10 pain. And I still had to function.

My children still needed breakfast and help getting dressed and someone to read them stories. My clients still needed their therapy sessions—which I conducted wearing a Fitbit and blood pressure cuff because I didn't know when the cardiac issues would flare and I didn't want to faint during a session. And I couldn't do anything to prevent it other than at least have it recorded, because the medical system wouldn't accept my symptom tracking through the Fitbit alone—only the blood pressure cuff readings. So I sat with clients, present for their pain while monitoring my own vital signs, hoping my heart rate wouldn't drop or spike mid-session.

And as a patient there’s more complexity to getting treatment. Going to the ER wasn't always a viable option. As ER doctors wouldn't understand a complex illness like SUNA when also treating for cardiac issues—they'd focus on the heart symptoms without comprehending that the neurological pain was part of the same complex picture. They wouldn't treat the pain appropriately. And with severe pain as the presenting complaint, the assumption would be drug-seeking or psychiatric. Seven hours of waiting in fluorescent lights and noise while in 9/10 pain, only to receive IV saline, minimal pain management, and be sent to a three-year cardiology waitlist. Seven hours for gaslighting, suspicion, or ineffective care that amounted to nothing. So I monitored at home, hoping I wouldn't need emergency care as I couldn't access it in a meaningfully anyway.

I maintained regular clinical supervision throughout this crisis, ensuring I had professional oversight about my capacity to practice and when I needed to adjust my client load. My workload changed week to week based on symptoms. And I was transparent with clients about my diminished capacity—not overwhelming them with details, just noting when I needed to adjust scheduling or session frequency.

My marriage stayed solid through this, but it required intentional management and clear communication strategies. When my brain fog was too bad, I'd say "I'm offline"—a signal that meant I couldn't cognitively comprehend what was being said, couldn't articulate what I needed, couldn't process what was happening. This gave my husband and the kids a way of knowing my cognitive state without me having to explain while impaired.

We used a marble theory, like spoon theory, with an actual jar to visually show where I was at capacity-wise. We compensated for my lack of abilities with online groceries and a weekly cleaner, we planned weekends together—deciding how to approach tasks I didn't have energy for. We planned fewer obligations based on where I was at. We checked in with each other—asking if my partner had emotional capacity for me to share where I was at before dumping it on him.

Crucially, I didn't overburden him with the full emotional toll. I protected him from the depths of despair and fear so he could help me with the physical toll. If I'd dumped all the emotional weight on him while he was managing kids, helping with our household, and watching me suffer, we'd both have drowned. This was strategic, not dishonest—leaning on my therapeutic counselling relationship took weight off the marriage and filled a social support hole. My therapist could hold the emotional devastation so my spouse could be my practical support. My business still needed administrative work. The bills needed paying. Life didn't pause because I was navigating a medical crisis.

I had to show up to my life—even as that life felt like it was actively falling apart.

Some days I managed okay. I could be patient with my kids. I could be present with clients. I could do the research I needed to do to find other viable treatment options.

Other days I failed at all of it. I was irritable with my children over small things. I felt distant with my partner. I zoned out during client sessions because my pain was so overwhelming I couldn't concentrate. I cried in the room, before bed, after seeing doctors, and family because I didn't have energy to advocate again.

The guilt was enormous. I was failing at being the mother I wanted to be. The therapist I prided myself on being. I felt like I wasn't the partner my husband deserved, even though he never made me feel that way. The patient I was supposed to be—stoic, compliant, grateful.

What I learned: You don't get to be perfect while surviving crisis. And you don't get to show up fully to all the areas of your life when your body is in survival mode and your energy is consumed by medical advocacy. My marriage stayed solid even through my worst days, my kids had a sturdy mom, even when I still carried guilt about not being able to give as much as I wanted to.

And that has to be okay. Because the alternative—demanding perfection from yourself while managing the unbearable—will destroy you.

The Therapeutic Tools That Kept Me Alive

I survived this by using every therapeutic tool I'd ever taught my clients. Not perfectly. Not consistently. But enough to keep going.

Breaking Everything Into Impossibly Small Steps

"Research international specialists" was too overwhelming. Instead: "Open one medical journal." Then: "Read one abstract." Then: "Add one name to spreadsheet."

On bad pain days, functioning meant reducing every task to its smallest possible component. Not "make dinner"—instead: "stand up," then "walk to kitchen," then "open fridge."

This isn't laziness or lack of motivation. This is survival. When your cognitive capacity is limited by pain and your emotional bandwidth is consumed by crisis, you work with what you have.

Strategic Self-Care

Self-care became strategic, not optional. When I had capacity, I scheduled it like a medical appointment. Twenty minutes of something that wasn't pain or advocacy or logistics.

Reading a chapter of a fantasy novel. Knitting a few rows. Watching something mindless. Anything that gave my nervous system a break from the constant stress of managing my medical situation. Things that were both in my control and lowered my stress.

I had to fight the guilt that said self-care was selfish when I "should" be researching more specialists or making more calls. Self-care wasn't optional—it was what allowed me to continue functioning.

Grounding When Overwhelm Hit

When the catastrophizing started—when my brain wanted to spiral into all the ways this could go wrong—I used the grounding techniques I teach clients.

Five things I could see. Four I could touch. Three I could hear. Two I could smell. One I could taste. And somatic tracking that focused on other areas of the body.

Bringing myself back to the present moment. Reminding my nervous system that right now, in this moment, I was safe.

But grounding only worked when my pain was below 7/10 and I could still engage cognitively. I learned that different pain levels require different tools. Under 7/10, I could use Pain Reprocessing Therapy skills and distraction techniques—as my brain could still shift attention.

Yet, above 7/10, when pain pushed me into fight-or-flight and cognitive strategies became impossible, I needed different interventions. That's when I used DBT distress tolerance skills, pacing strategies, and the Safe and Sound Protocol—a music-based listening therapy that regulates the nervous system without requiring active thinking or steps to follow. When you're managing cardiac complications we don't yet understand, severe neurological pain, and constant medical trauma, passive nervous system regulation becomes essential. SSP worked when my brain couldn't.

Daily Radical Acceptance

You cannot live and adapt to life in this system without daily radical acceptance and reality acceptance skills from DBT. Every single day, I had to radically accept the reality I couldn't change: that the system was broken, that waitlists were years long, other people have opinions I don’t like on what I’m going through, and that I was in severe pain, that I had to coordinate my own international treatment, that doctors would assume I was drug-seeking, that I'd lost my friend groups, and mostly that support wasn't coming.

Radical acceptance doesn't mean liking the reality or approving of it. It means accepting what is so you can work with it rather than exhausting yourself fighting against unchangeable facts. Reality acceptance allowed me to stop asking "why is this happening?" and start asking "given this is happening, what can I do?"

This was daily work. Some days hourly. The alternative was drowning in bitterness and rage at the unfairness—which was valid but not survivable long-term alongside everything else.

Focusing on What I Could Control

When everything feels out of control—symptoms unpredictable, system unresponsive, relationships that don't understand—it becomes essential to focus on what you CAN control. Some days, maintaining that focus is survival itself.

I couldn't control my pain levels. I couldn't control the six-year waitlists. I couldn't control whether doctors would believe me. I couldn't control my cardiac symptoms or when they'd flare. I couldn't control whether the system would help me.

But I could control: breaking a task into tiny steps. Drinking coffee. And asking for what I needed that day (Starbucks, knitting time, petting fuzzy animals, quiet time). Saying "I'm offline" when brain fog was too severe. Setting one boundary. Declining one obligation. Using one grounding technique. Making one phone call. Writing one email to one specialist.

When everything else felt overwhelming and uncontrollable, narrowing focus to the one or two things I could influence that day kept me from complete paralysis. Not because it fixed anything—it didn't. But because having ANY sense of agency, however small, was psychologically essential when the larger reality was "everything is out of your control."

This isn't toxic positivity. It's recognizing that when you can't control symptoms, system, or others' understanding, focusing on your tiny sphere of control is what allows continued functioning.

Allowing Distraction

I gave myself permission to not think about my medical situation sometimes. To watch a show without educating myself about my condition. To have a conversation about something else entirely.

This wasn't avoidance. It was necessary mental rest. Your brain cannot process crisis 24/7. It needs breaks. So set a timer and put a limit on your time to focus on it. Distraction is a valid coping mechanism, not a character flaw.

Boundaries That Felt Cruel But Were Essential

I couldn't explain myself repeatedly to people who weren't going to understand. I couldn't be everyone's educator about my rare condition. I couldn't answer every "how are you doing?" with honesty—sometimes I needed to say "hanging in there" and change the subject.

I learned to say "I appreciate your concern, but I can't discuss this right now" without guilt. I learned to not respond to unsolicited medical advice. I learned to protect my energy for the advocacy work that actually mattered. I learned to take notes on painful opinions and table them for counselling with my therapist. I learned boundaries in the complex situation.

Some people thought I was being cold or distant. Maybe I was. But I was also fundamentally ensuring that I was surviving.

Accepting Help

This was harder than it sounds for someone used to being the helper. When my partner said "I'll handle bedtime," I had to let him. When family offered support, I had to accept even when it had strings. When someone brought a meal, I had to say yes instead of proving I could manage alone.

Accepting help meant accepting that I couldn't do everything myself. That felt like failure. It wasn't. It was wisdom. I had to table some issues that arose as a future me problem as current me needed to survive.

Forgiving Myself for Being Human

Some days I didn't manage any of it well. Some days I was irritable with my kids over nothing. Some days I was distant with my partner because I had nothing left to give. Some days I cried when I should have been strong.

I had to forgive myself for not being the perfect patient, the perfect mother, the perfect therapist, the perfect wife. I had to accept being human through all of this—messy, imperfect, doing my absolute best in an impossible situation.

What I've Learned From Both Sides

I've been a chronic illness patient since I was around 18, when fibromyalgia, chronic fatigue, and trigeminal autonomic cephalgia emerged during my university years. I've been a therapist specializing in chronic illness and trauma for years. The dual perspective has always been there—I became a therapist because of my lived experience with both early trauma and chronic conditions, not despite them.

But this most recent crisis—when my trigeminal autonomic cephalgia escalated to severe SUNA requiring international treatment, combined with cardiac complications and potential cancer diagnosis, all while managing kids and a business—deepened that understanding in ways over fifteen years of prior chronic illness experience hadn't prepared me for.

As a therapist with chronic illness, I understood the psychological frameworks. I knew about adjustment disorders and grief and trauma responses. I could explain the mind-body connection and validate the emotional toll. I'd lived through years of flares and symptom management with fibromyalgia and chronic fatigue. I'd managed headache conditions for years. I'd navigated medication side effects, and medical appointments while getting my degrees, balancing two toddlers and building my practice. I thought I knew what patient advocacy meant.

But this level of medical crisis taught me new layers.

I learned the specific exhaustion of advocacy at this scale—coordinating international specialists, researching rare conditions with limited information, navigating contradictory medical advice while in severe daily pain. I'd advocated for myself with multiple conditions for over fifteen years, but not like this. Not when the stakes were this high. Not when treatment failure meant no options were left on the table.

I learned what it feels like when you've tried everything and you're out of options. When the system you've been navigating for over fifteen years with multiple conditions finally tells you "we can't help you anymore." When you're facing permanent disability because your treatment options have been exhausted.

Many patients choose MAID not because they want to die, but because they can't get help in the system. When the choice becomes indefinite suffering in waitlist purgatory versus ending that suffering permanently, MAID becomes not a desire for death but a desperate escape from a system that has abandoned you. This is system failure, not patient choice. The tragedy isn't that MAID exists—it's that patients are driven to it by healthcare systems that offer years-long waits instead of treatment.

I learned the crushing weight of having to function at this level while managing everything else. I'd juggled multiple chronic conditions with work and life for over fifteen years. I'd gotten through university and graduate school with fibromyalgia and chronic fatigue. I'd built my counselling practice while managing trigeminal autonomic cephalgia. But adding international treatment coordination, multiple simultaneous medical crises, cardiac complications, and being separated from my children? That was new territory.

I learned what it's like when well-meaning people minimize your suffering with suggestions about yoga or positive thinking—even after fifteen years of chronic illness with multiple conditions, this crisis brought a new level of minimization because the severity was incomprehensible.

I learned the weight of having to advocate for yourself when past medical experiences have taught you not to trust the system or your own perceptions. After over fifteen years as a patient with fibromyalgia, chronic fatigue, and trigeminal autonomic cephalgia, I had plenty of those experiences with gaslighting, misdiagnosis, and dismissal. This crisis added more.

And most importantly, I learned the profound gift of having someone—my own therapist—who didn't minimize, didn't judge, didn't offer solutions, but simply witnessed and validated that what I was experiencing was genuinely unbearable.

The therapeutic relationship worked because I could show up authentically. I could drop the mask I wore everywhere else. She was a good fit—our working relationship clicked in ways that matter for therapy. She recognized the system failures I was facing and didn't gaslight me about them. And critically, she created emotional space where my life had absolutely none.

Everyone came to me for support. My clients came for their therapy. My kids came for their emotional needs. My family came to me for support even during my crisis. I showed up for everyone. The only person I had to receive from was my spouse—who was managing the physical toll—and my therapist. She created the one space where I didn't have to give, where I didn't have to perform, where I could receive the witnessing I desperately needed.

That non-judgmental presence, that space to authentically collapse, was survival itself.

What Therapists Need to Know

If you work with clients with chronic illness, here's what I wish more clinicians understood:

Patient advocacy is compensating for system failure, not partnership with a functioning system. When clients talk about researching specialists, creating databases, tracking appointments, verifying procedures—this isn't empowered participation in their care. This is work the healthcare system should do but doesn't. Every email they send, every specialist they track down, every verification call they make—that's labor to compensate for a broken system that abandoned them. The entire burden falls on the patient to fix what the system failed to provide. Understand the exhaustion isn't just from being sick—it's from doing the system's job while sick.

The advocacy work is invisible labor. When clients say they're exhausted from medical appointments, understand it's not just the appointment. It's the hours of research beforehand. The phone calls to verify information. The documentation to bring. The emotional energy of having to prove they're credible and deserve help. The recovery time afterward when they're depleted.

Each specialist expects patients to trial multiple medications—often while managing life responsibilities. With each new specialist comes pressure to try their preferred treatments, even when similar approaches have already failed. Clients become guinea pigs—cycling through medications, suffering withdrawal symptoms between trials, managing side effects while raising kids, working, maintaining relationships. Some patients endure these trials while in graduate school with toddlers, managing impossible combinations of responsibilities. The weight of these trials—physical toll of withdrawals, hope that maybe this one will work, inevitable disappointment, starting over again—compounds everything else.

When clients seem resistant to trying "just one more medication," understand they may have already endured dozens of failed trials while functioning through withdrawals. They feel like experiments, not people. And here's the impossible bind: if a patient declines a treatment—even one they've already tried and failed, even one they're allergic to—the doctor may label them "non-compliant" in their file, or refuse to offer any other treatment options. Patients are coerced into accepting treatments they know won't work or will harm them, or risk losing access to care entirely. This isn't patient choice—it's medical coercion disguised as treatment.

Medical trauma is real trauma. Being dismissed, not believed, or having pain undertreated creates genuine trauma responses. Clients may struggle to advocate for themselves not because they lack skills, but because their nervous system has learned the system isn't safe.

Anxiety and depression in chronic pain patients are often trauma responses, not psychosomatic causes. When you see clients with chronic pain who also have anxiety or depression, resist the assumption that mental health issues are causing physical symptoms. More often, the anxiety and depression are trauma responses FROM years of navigating a dismissive, gaslighting medical system. The trauma creates PTSD-like symptoms—hypervigilance at appointments, panic about seeking care, depression from repeated dismissal. The system itself is traumatizing. These aren't psychosomatic presentations; they're legitimate trauma responses to systemic harm.

Chronic pain patients face stigma at every appointment. Clients with severe pain—especially neurological or invisible conditions—are routinely suspected of drug-seeking or labeled as psychiatric cases. This isn't paranoia; it's reality. They walk into appointments knowing they'll need to prove legitimacy, bringing research papers and documentation just to be taken seriously. This stigma exhausts them before care even begins and contributes significantly to medical trauma.

Masking is a survival skill, not deception. Chronic pain patients learn to modulate their emotional presentation constantly—too much emotion risks psychiatric evaluation instead of medical treatment, too little emotion means being dismissed as not serious enough. They walk a tightrope, performing the "right" level of distress to appease the system while in severe pain. This is exhausting invisible labor. When clients seem calm or put-together in session, understand they may be expertly masking—a skill honed through years of negative consequences for authentic emotional expression in medical settings. Their care quality often depends on catching doctors on good days, not on their actual medical needs.

When clients find a good doctor, they know it won't last. On rare occasions, clients meet a doctor who actually believes them and helps—it feels like finding a unicorn. They'll have brief hope, then inevitable grief when that doctor refers them to the next provider. Each handoff typically means falling through cracks, losing progress, and starting over with proving legitimacy. The system can't maintain continuity of good care. Understand that your client may be grieving past good doctors they've lost to the referral chain while simultaneously dreading the next inevitable dismissal.

Severe cases face isolation even from the chronic illness community. When a client's condition is intractable rather than manageable, they may experience minimization even from people with chronic illnesses who can't grasp that severity. They'll be told to "just medicate it" when medications have failed, compared to manageable orthopedic issues when they have intractable neurological pain, or gaslit into thinking they're being dramatic. This creates profound isolation—even their "community" doesn't understand. Validate that intractable is different from manageable, even if both are chronic.

Chronic illness doesn't receive the support acute illness does. Communities rally for acute crises—surgery, cancer treatment, temporary health events—with meals, cards, gifts, practical help. Chronic illness gets none of this sustained support. The crisis is too long, too invisible, too exhausting for people to maintain. By the time clients are in severe crisis, friend groups were likely lost years ago. They're doing the hardest advocacy work of their lives—coordinating complex care, managing multiple specialists, researching while in severe pain—in complete isolation. No casseroles. No encouragement. Just the expectation they're "used to it by now." This isolation compounds trauma and exhaustion.

Functioning during crisis doesn't mean thriving. Clients may be "managing"—going to work, taking care of kids, showing up to sessions—while actively falling apart. Don't mistake the performance of functionality for actual well-being.

They may be monitoring their own health during your session. Some clients with unstable medical conditions are tracking symptoms in real-time even while sitting with you. They might be wearing monitors, checking devices, or mentally tracking symptoms while trying to be present. This split attention isn't disrespect—it's survival. The system's distrust of patient-generated data means they need "official" documentation, so they're collecting it constantly, even in therapy.

Emergency care may not be accessible for complex conditions. When clients have rare or poorly understood conditions, going to the ER often means hours of waiting, doctors who don't understand their condition, inadequate pain management, and being sent home with no solutions—just longer waitlists. They learn through repeated trauma that emergency care won't help and may cause additional harm through dismissal. Don't assume ER is a viable safety net for clients with complex medical conditions.

Validation is treatment. Sometimes the most therapeutic thing you can offer is acknowledging that their situation is genuinely unbearable and they're doing remarkable work surviving it. Not fixing, not problem-solving, not positive reframing—just witnessing.

If clients mention MAID, understand it's often system failure, not desire for death. When treatment options are exhausted and the system offers only years-long waitlists, some patients consider Medical Assistance in Dying not because they want to die but because they can't get help. The choice becomes indefinite suffering versus ending that suffering. This is a desperate response to healthcare system abandonment, not a psychiatric issue. If your client is considering MAID, validate the unbearability of their situation while exploring whether any treatment options remain unexplored. The tragedy isn't that MAID exists—it's that patients are driven to it by systems offering waitlist purgatory instead of care.

Create space where they can receive instead of give. Many clients with chronic illness are caregivers—to their own clients if they're therapists, to their children, to family members who come to them for support even during crisis. They show up for everyone and have little to no space where they receive care. Therapy may be the only place they don't have to perform or give. Let them authentically collapse. Let them show the despair they hide everywhere else. Create the emotional space their life doesn't have. This receiving space is not indulgence—it's survival necessity.

They need permission to be imperfect. Clients with chronic illness often hold themselves to impossible standards—believing they should handle it all gracefully while being a good patient, parent, partner, professional. Give them permission to be irritable, to struggle, to not have it all together.

Small steps aren't lack of ambition. When clients break tasks into tiny components, that's sophisticated executive function in the face of cognitive and physical limitations. Honor that adaptation rather than pushing for more.

Boundaries aren't selfishness. Clients learning to say no, limit medical discussions with unhelpful people, or protect their energy may feel guilty. Help them reframe boundaries as essential survival tools, not moral failures.

Match interventions to their current capacity. Cognitive strategies like grounding or reframing work when pain/symptoms are manageable. When clients are in high pain or fight-or-flight, they need passive regulation tools that don't require active thinking—somatic interventions, music-based therapies, or simple body-based practices. What works at 5/10 pain won't work at 9/10. Help clients build a tiered toolkit for different symptom levels.

Radical acceptance is survival, not resignation. Clients with chronic conditions cannot adapt to life in the system without daily radical acceptance and reality acceptance skills. They must accept unchangeable realities—broken systems, years-long waitlists, inadequate care, lost support—so they can work with what is rather than exhausting themselves fighting facts they cannot change. This isn't giving up or approving of injustice; it's surviving long enough to do the advocacy work that might create change. Help clients distinguish between accepting reality and approving of it. Validate that this daily work is exhausting and necessary.

Help clients focus on what they can control when everything feels uncontrollable. When symptoms are unpredictable, systems unresponsive, and relationships don't understand, clients can become paralyzed by the overwhelming sense that everything is out of their control. Help them narrow focus to their tiny sphere of control—one task broken down, one boundary set, one self-care act, one phone call made. This isn't toxic positivity; it's maintaining psychological agency when the larger reality is genuinely out of their control. The goal isn't fixing anything—it's preventing complete paralysis by identifying ANY area of influence, however small.

If you're practicing while managing serious health issues, maintain regular supervision. You need professional oversight about your capacity to practice and when to adjust your workload. Your symptoms may fluctuate week to week, requiring flexible client load management. Be transparent with clients about your diminished capacity—not overwhelming them with details, just noting when you need to adjust scheduling or session frequency. This isn't a failure—it's ethical responsibility and modeling the self-care and boundaries we teach our clients.

A Message to Fellow Patients

If you're navigating complex medical systems while trying to maintain regular life—if you're researching specialists while raising kids, managing symptoms while working, advocating for yourself while feeling invisible—here's what I want you to know:

The isolation is real, and it's not your fault. People don't understand what they haven't experienced. The minimization hurts. The unsolicited advice is exhausting. The fact that others get more support than you do as the person actually suffering—that's not in your head. It's a real pattern, and it's deeply unfair.

And if even people with chronic illnesses don't understand your severity—if they suggest you just medicate it when you've exhausted options, if they compare your intractable pain to their manageable conditions, if they gaslight you into thinking you're being dramatic—that's real too. There's a hierarchy of comprehension even within the chronic illness community. When your experience is more severe than what others can imagine, you face isolation from all directions. You're not exaggerating. Intractable is different from manageable, even if both are chronic.

If you're doing this work alone with no casseroles, no cards, no support—that's the chronic illness reality. Acute illness gets community rallying—meals, gifts, encouragement, practical help. Chronic illness gets none of that sustained support. Your crisis is too long, too invisible, too exhausting for people to maintain care. Your friend groups? Probably lost years ago. So you're coordinating international treatment, managing multiple crises, researching through brain fog and severe pain, all while completely alone. No one brings you coffee. No one sends cards. Just the expectation you're "used to it by now." The isolation of doing the hardest work of your life without support is real and profoundly unfair.

Past medical experiences may be affecting your ability to advocate now. If you've been dismissed, minimized, or not believed, seeking help becomes terrifying. That's trauma, not weakness. Be gentle with yourself about the ways past experiences shape your current interactions with healthcare.

If you have anxiety or depression alongside your physical condition, that's likely trauma from the system, not proof your symptoms are "all in your head." Doctors often see anxiety or depression in chronic pain patients and assume the mental health issues are causing the physical symptoms. That's backwards. Your anxiety and depression are probably trauma responses FROM years of being dismissed, gaslit, and inadequately treated. The system itself is traumatizing. When you're hypervigilant at appointments, panicking about seeking care, or depressed from repeated dismissal—those are PTSD-like symptoms from medical trauma. Your physical symptoms are real, and so is the trauma the system caused.

If you've considered MAID, that's a response to system failure, not personal failure. Many patients consider Medical Assistance in Dying not because they want to die, but because they can't get help in a system that offers only years-long waitlists. When the choice becomes indefinite suffering versus ending it, MAID can feel like the only escape from a system that's abandoned you. This is system failure driving desperation, not you giving up. If you're in this place, please tell someone—your therapist, a crisis line, someone who can help explore whether any options remain. The tragedy isn't that you're considering it; it's that the system drove you there.

If you're assumed to be drug-seeking or psychiatric at every appointment, that's real bias you're facing. Chronic pain patients, especially with neurological or invisible conditions, are routinely suspected of exaggeration or addiction. This isn't in your head. The fatigue of proving your legitimacy at every appointment—bringing documentation, research, and specialist letters just to be taken seriously—is exhausting labor on top of managing symptoms. You shouldn't have to prove you're credible to receive basic care, but until the system changes, your over-preparation is survival strategy, not paranoia.

When you find a doctor who actually believes you, cherish that moment even as you grieve what's coming. Finding a doctor who treats your pain as real without making you prove it feels like meeting a unicorn—rare, precious, almost magical. You'll have a moment of hope and relief. Then they'll refer you to the next provider, and you know you'll likely fall through the cracks again. The waitlist wheel starts over, you lose the progress and trust you'd built, and the next doctor probably won't believe you either. This cycle of hope and loss is part of the trauma. The grief of losing good doctors to the referral chain is real.

If going to the ER feels impossible, you're not being dramatic. When you have a rare or complex condition, you learn through repeated experience that emergency care won't help. Seven hours waiting in pain for doctors who don't understand your condition, minimal pain management, and being sent home with nothing but longer waitlists. The ER isn't a safety net when they can't treat what you have. That calculation—"the harm of going outweighs any benefit"—is rational, not avoidance. You're making informed decisions based on repeated trauma.

If you've learned to mask your pain and emotions, that's survival, not dishonesty. You've learned through painful experience that showing too much emotion gets you a psychiatric evaluation instead of medical treatment. Showing too little emotion gets you dismissed as not serious enough. So you've become excellent at walking the tightrope—modulating your presentation to appease a system that doesn't care, hoping you catch the doctor on a good day to get good care. This constant performance while in severe pain is exhausting. Your care shouldn't depend on your ability to perform the "right" amount of distress or the doctor's mood. But until that changes, your masking is a rational response to systemic failure.

If you feel like a guinea pig cycling through medications, that's because you've been made one. Each specialist wants you to trial their preferred treatments, often repeating approaches that have already failed. You suffer through medication trials, withdrawal symptoms, side effects—all while raising kids, working, managing life. The hope that maybe this one will work, followed by inevitable disappointment and starting over again. The weight of these trials compounds everything else you're carrying. If you're resistant to "just trying one more medication," that's not giving up—that's rational self-protection after enduring dozens of failed trials while functioning through withdrawals. You're a person who deserves treatment, not an experiment.

And here's the cruelest part: if you decline a treatment—even one you've already tried and failed, even one you're allergic to—doctors may label you "non-compliant" in your file or refuse to offer other treatment options. You're forced to choose between accepting treatments you know won't work or will harm you, or losing access to care. You're not being difficult—you're being coerced. This is medical coercion, not patient choice.

You don't have to function perfectly while falling apart. You're allowed to be irritable. You're allowed to cry. You're allowed to have nothing left to give some days. You're allowed to be human while surviving something inhuman.

Use every tool you have, but match them to your capacity:

• Break overwhelming tasks into steps so small they feel ridiculous

• Schedule self-care like medical appointments when you have capacity

• When symptoms are manageable (under 7/10 pain), use cognitive strategies: grounding techniques (5-4-3-2-1 sensory awareness), distraction, reframing

• When symptoms are severe (above 7/10 pain) or you're in fight-or-flight, use passive regulation: music-based nervous system tools, pacing, distress tolerance skills that don't require active thinking

• Practice daily radical acceptance and reality acceptance: accept what you cannot change (broken system, long waitlists, inadequate care, lost support) so you can work with reality rather than exhausting yourself fighting unchangeable facts

• Focus on what you CAN control when everything feels uncontrollable: when symptoms are unpredictable, system unresponsive, and relationships don't understand, narrow your focus to your tiny sphere of control—break one task into steps, set one boundary, make one self-care choice, complete one phone call. You can't control symptoms, system, or others' understanding, but you can control small actions within your reach. This prevents paralysis.

• Build a tiered toolkit—what works at 5/10 won't work at 9/10

• Set boundaries ruthlessly—you can't explain yourself to everyone

• Accept help even when you're used to being the helper

• Forgive yourself for not being perfect

If you have a partner managing the physical toll, protect them from the full emotional weight. This isn't dishonesty—it's strategic burden management. Communicate clearly about pain levels and cognitive capacity so they know what's realistic. But if you have access to therapy or other emotional support, use it to process the despair and fear. If your partner is drowning in both physical caregiving AND emotional witnessing, neither of you will survive. This is sophisticated relationship management, not weakness.

Find space where you can receive instead of give. If you're showing up for everyone—your kids, your work, family who comes to you for support even during your crisis—you need at least one space where you don't have to perform or give. Therapy, if you can access it. A support group. Somewhere you can authentically collapse and receive the witnessing you're not getting anywhere else. This isn't indulgence—it's survival necessity.

Get therapeutic support if you can. Having someone trained to validate your experience—not to fix it, but to witness its genuine unbearability—can be a lifeline. You don't need therapy to "cope better." You need someone who says "this is actually unbearable, and you're doing remarkable work surviving it."

Survival doesn't have to look heroic. Sometimes it's just getting through one more day. Sometimes it's crying in your car before an appointment and going in anyway. Sometimes it's being an okay parent instead of a great one. Sometimes it's doing the bare minimum and calling that enough.

You're not failing. You're surviving. And that's more than enough.

The Gift of Dual Perspective

I didn't become a therapist and then become a patient with chronic illness. I developed multiple chronic conditions—fibromyalgia, chronic fatigue, and trigeminal autonomic cephalgia—around age 18, during my university years. That lived experience with both early trauma and chronic illness shaped my decision to become a therapist specializing in these areas. I chose this work because I understood it from the inside.

The dual perspective has always been there, but this crisis—when my trigeminal autonomic cephalgia escalated to severe SUNA—deepened it in profound ways. Now I can hold both the professional understanding and over fifteen years of lived reality with multiple chronic conditions, including this most severe chapter.

I can name the psychological frameworks while knowing they don't fully capture the experience of living with fibromyalgia, chronic fatigue, and severe neurological pain. I can offer therapeutic tools while acknowledging they only make the unbearable slightly more bearable. I can validate my clients' experiences with the authority of someone who's lived it for over fifteen years with multiple conditions, not just studied it.

If there's any gift in this suffering, it's that. The ability to say to my clients: "I know. Not theoretically—actually. I know what it costs to advocate while in pain. I know the isolation. I know the impossible task of showing up to life while falling apart. I know."

And that knowing, that shared understanding, creates a space where healing can begin. Not healing of the body necessarily—chronic illness may not have that. But healing of the isolation, the shame, the belief that you should be handling this better.

You're handling it exactly as well as anyone could. And that's what I wish someone had told me sooner.

What This Journey Taught Me

Patients with chronic conditions can adapt to life with illness. We have the skills. We have the tools. We can learn to pace ourselves, use nervous system regulation, set boundaries, break tasks into manageable pieces, advocate strategically. We practice daily radical acceptance of realities we cannot change—broken systems, years-long waitlists, severe pain, inadequate care, lost support. We can coordinate complex medical care, research international specialists, create databases, manage multiple crises while raising kids and working.

We are remarkably capable.

But in our system, we bear the whole weight of finding resources and getting care. The expertise exists—we develop it through years of necessity. The resilience exists—we build it through repeated trauma. The advocacy skills exist—we hone them through constant rejection and dismissal.

The system forces patients to become their own medical coordinators, researchers, case managers, and treatment planners. We do it because the alternative is waitlist purgatory—six-year waits for specialists, indefinite pain, permanent disability, or death.

We can do this work. We do this work. The question isn't whether patients are capable—clearly we are, or we wouldn't survive.

The question is: why are we required to do it alone? Why does survival depend entirely on the patient's ability to navigate a system designed to obstruct rather than help? Why is the burden of system failure placed entirely on the people least able to carry it—those in severe pain, cognitively impaired, financially devastated, socially isolated, and already exhausted?

We adapt because we must. But adaptation shouldn't be confused with the system working. It's the opposite—it's evidence of system failure so complete that survival requires extraordinary patient capability deployed in isolation.

This is the journey. The work is on us. And until the system changes, we carry the whole weight.