Chasing Windmills: When Your Family Calls Your Self-Advocacy “Crazy”
Rosalind Lovelace writes about fibromyalgia and what it costs to be believed.
The research they mock is the road, and the dismissal is the tactic. Stop auditioning for permission to run your own care.
Not medical advice. These articles offer information and support for people living with fibromyalgia. Talk with your own care team before starting, stopping, or changing any treatment.
The pattern
You mention the rheumatology program two states away, the one whose intake packet sits printed on your desk, and someone laughs into their coffee. There she goes again. An uncle does air quotes around the word research. Somebody brings up Don Quixote, pleased with himself, as if a man on a horse settles the question of your nervous system.
Notice the shape of it. Nobody at that table asked what the program treats, or what the last specialist said, or why your current plan stalled. The joke lands in the exact spot where a question should have gone. Mockery does the work of an argument without doing any of the reading.
Family therapy has a name for the seat you are sitting in. The family scapegoat is the member assigned the role of the problem, and clinicians who write about the role keep arriving at the same uncomfortable observation: the scapegoat is often the most aware person in the family, the one who says out loud what the rest have agreed to look away from. In a family that has settled into treating your illness as background noise, your research is a loud and unwelcome argument that something can actually be done.
And that is the part they never say at the table. Your effort accuses their comfort. If your reading pile is legitimate, then years of shrugging were a choice. Far easier to make the pile ridiculous. Far easier if you are Don Quixote, because then every giant is imaginary and nobody has to feel bad about the shrugging.
There is a version of you the family finds easier to hold: sick enough to explain the empty chair at gatherings, quiet enough to change no plans. The specialist hunt breaks that arrangement. It announces that you expect a different future, and that everyone's role in the old one is up for review. Watch how fast the word crazy arrives once your expectations do.
Nobody at that table has read your evidence. Comfort is the only thing under review.
Why it lands harder with fibromyalgia
Speaking up for your own care sounds simple, and it is one of the most studied hard things in medicine. Researchers treat self-advocacy as a skill set: naming your needs, questioning what does not fit, taking part in decisions. A 2025 meta-synthesis of patients' experiences found that most patients hit real barriers just trying to articulate their needs, and that support and information are what make advocacy possible at all. The skill your family laughs at is the one the literature says patients most need to build.
The reading pile itself is on the map too. A study that had people with fibromyalgia draw timelines of their illness found the same road again and again: onset, the long push toward diagnosis, acceptance, and finally a management strategy that works. Intense, active information seeking is the engine of the middle stretch, and the same study found it eases into lighter monitoring once care starts working. Deep research is what the road to a fibromyalgia diagnosis looks like from the inside. Out-of-state clinics, second opinions, even reading the dense stuff at midnight: that is travel, and the map says the pace settles.
Hold the double standard up to the light while you are at it. Nobody calls it obsession when a neighbor drives two states for a trusted mechanic, or reads forty reviews before buying a mattress. Applied to a disease that stumps generalists, the same diligence suddenly earns a psychiatric label. Escalating to specialists when local care stalls is standard medical practice, and the referral system exists precisely because no one doctor knows everything. You are following the protocol. The couch commentary is what departs from it.
Now the cost of doing that traveling in a doubting family. A study of 152 people with chronic widespread pain found invalidation coming from every direction, and it found something sharper: the patients who had seen a doctor more often in the past year reported more invalidation, and higher invalidation traveled with worse mental health. Read that carefully. The people fighting hardest for care absorb the most disbelief. The disbelief is a tax on effort. It says nothing about whether the effort is right.
Fibro fog raises the stakes of every one of those dinner-table skirmishes. Defending your plan against a laughing relative burns the same focus you budgeted for the actual appointment. Every audition you decline is cognition saved for the fight that counts.
The counter
You do surrender something when you stop defending your research. You surrender the debate. Keep the plan.
Stop auditioning
A medical decision needs your consent and your care team's judgment. It does not need a family vote, and it never did. So change the format: report decisions instead of submitting proposals. “I start with the new clinic in March” is an announcement. “I was thinking about maybe trying this clinic” is an invitation to a jury you never empaneled.
The information diet from article one applies here in one line: relatives get announcements, allies get details, and the intake packet is between you and the clinic.
Timing matters as much as format. Announce after you book, never before. A plan that has already happened offers nothing to veto, and a veto nobody can use tends to stay in the drawer.
Read the pushback as physics
Bowen family systems theory describes a family as a single emotional unit that works to keep its balance. When one member starts holding their own course, the theory calls it differentiation, and the system pushes back to restore the old arrangement. The pushback arrives dressed as concern, or ridicule, or a nickname from a novel.
Their discomfort measures the system's inertia, and it carries no information about your sanity. You changed. The system is complaining about the change. That is the whole event.
Handle the dismisser like weather
For the relative who waves off invisible illness on principle, a patient-community guide to unsupportive behavior recommends naming the dismissal once, in the moment, and asking for the exact sentence you need instead. Its sharper move is triage: it sorts your relationships into good medicine, medicine with side effects, and toxic drugs, and tells you to spend your energy accordingly. The relatives who ask real questions are the good medicine.
Treat the committed dismisser like rain. You put on a coat, you route around the puddles, and you save the arguing for something arguing can change.
Keep one prepared line and one ready subject change in your pocket for each of them. The pivot costs you two sentences. The debate they wanted would have cost you the evening and half of tomorrow.
Word for word
Scripts survive fibro fog better than improvisation. Deliver these once, without footnotes. Explanations invite the debate you just declined.
“I did not ask for a vote. I am telling you my plan.”
“You are welcome to read the study first. Until then, I am done defending it.”
“My care team and I disagree with you. We are comfortable with that.”
“Call it windmills if you like. The appointment is Thursday either way.”
The walk-away
Some dinners turn into a panel review of your sanity, with your relatives as the panel and your effort as the exhibit. You are allowed to leave the review. Stand up mid-laugh if you have to. “I am getting some air” requires nobody's approval, and neither does the door.
Expect one follow-up text, the one that arrives smirking: any miracle cures yet. It gets silence, or it gets the weather. A joke with no audience closes early, and you are under no contract to be the audience.
Nothing about the mockery has cancellation power. The appointment stands. The packet is still on your desk. You can love people who are wrong about you, and you can do it from whatever distance keeps your plan intact. Leaving the table with your plan unshaken is a win, and it is the quiet kind that compounds.
Inside the walls
Tonight, four quiet moves.
- Write the wins list: everything the research has already gotten you. The name for the pain. The referral. The medication that helped. One page. Read it whenever somebody laughs.
- Pick your one progress-report ally, the person who gets the real updates. Everyone else gets announcements.
- Schedule the appointment tonight, before anyone's doubt has a chance to refill the room.
- Put tomorrow's question at the top of the pile, so the research keeps a target and the pile keeps earning its place.
The wins list doubles as fog insurance. On the days when a laughing voice is easier to recall than your own progress, the page remembers for you.
The road you have already traveled is the proof the road exists. Thirty years of loose threads became a diagnosis for thousands of patients exactly this way: somebody kept reading after the room told her to stop.
You have been right before. Rest on that.
Clinical questions
For readers who want the science behind this article at full strength.
What does self-advocacy research actually study?
Researchers treat self-advocacy as a set of skills: naming your needs out loud, questioning a plan that does not fit, and taking part in treatment decisions instead of receiving them. A 2025 meta-synthesis that pooled qualitative studies of cancer patients found the same pattern across them: most patients run into real barriers when they try to articulate their needs, and support and information are what make advocacy possible. The skill you have been building under mockery is the one the literature says patients need most.
Is heavy research a normal phase of a fibromyalgia diagnosis?
Yes, and it has been mapped. A study in the Journal of Medical Internet Research had people with fibromyalgia draw timelines of their illness and found four repeating stages: onset, the long push toward diagnosis, acceptance, and a working management strategy. Intense, active information seeking powers the middle of that road, and the same study found it settles into lighter monitoring with occasional focused searching once management starts working. The reading pile has a place on the map, and the map says it shrinks.
Does fighting harder for care attract more disbelief?
One study measured exactly that. Among 152 people with chronic widespread pain, those who had seen a doctor more often in the previous year reported higher invalidation scores, and invalidation went hand in hand with worse self-reported mental health. Patients in that study reported disbelief from every direction, most of all from institutions and least from spouses. The disbelief that follows effort is a documented burden of being an active patient. It is a tax on the fight, and it carries no verdict on whether the fight is justified.
What does family systems theory call what my family is doing?
Bowen family systems theory describes a family as one emotional unit rather than a collection of individuals. Each member holds a role that keeps the unit steady, and the theory's central skill, called differentiation of self, is the capacity to hold your own thinking and your own course while staying connected to people who disagree. When one member starts differentiating, the unit typically pushes back to restore the old balance, and the pushback often arrives as ridicule or labels. In that frame, being called crazy for advocating is the system defending its balance.
Glossary
- Self-advocacy
- Naming your needs, questioning what does not fit, and taking an active part in your own treatment decisions.
- Scapegoat
- The family member assigned the role of the problem, often the person most willing to say what the rest of the family avoids seeing.
- Differentiation of self
- The capacity to hold your own thinking and course while staying in relationship with people who disagree.
- Family homeostasis
- A family system's pull toward its old balance, felt as pressure on whichever member is changing.
- Provider cycling
- Moving through a series of doctors and clinics while searching for answers, common on the road to a fibromyalgia diagnosis.
- Invalidation
- The perception that your social world does not recognize your medical condition, measured in research across five sources including family and health care.
Sources
- ReachLink (2026). Why the Family Scapegoat Is Usually the Most Aware One. Read the guide.
- Lin L, Jin Y, Feng C, Zhu K (2025). The experience of self-advocacy among cancer patients: A qualitative meta-synthesis. PLOS One. Full text.
- Chen AT (2016). The Relationship Between Health Management and Information Behavior Over Time: A Study of the Illness Journeys of People Living With Fibromyalgia. Journal of Medical Internet Research. Full text.
- Järemo P, Arman M, Gerdle B, Gottberg K (2022). Facing invalidation: a further challenge when living with chronic widespread pain. Journal of Rehabilitation Medicine. Full text.
- Psychology Today (2023). Understanding Bowen Family Systems Theory. Read the overview.
- CreakyJoints (Kelsey Kloss). 6 Sneaky Signs Someone Isn’t Supportive of Your Chronic Illness (and What to Do About It). Read the guide.