social connection glossary

Short Definition:
Discrimination or prejudice against people with disabilities.

Long Definition + Context:
Ableism appears in structural barriers (no ramps, inflexible schedules) or interpersonal micro-invalidations (“You don’t look disabled”). Naming ableism empowers patients and caregivers to insist on respect, educate others, and secure inclusive practices that sustain social participation.

Short Definition:
Fully focusing on and reflecting back another’s words and feelings.

Long Definition + Context:
Involves undistracted attention, verbal affirmations, and paraphrasing (“So you’re feeling…”). For patients whose symptoms are invisible, being truly heard by peers or carers builds trust, validates experience, and reduces isolation.

Short Definition:
The act of supporting or arguing in favor of a cause or policy.

Long Definition + Context:
In the chronic-illness world, advocacy means raising awareness, educating others (family, employers, policymakers), and pushing for better research, treatments, or accommodations. Examples include organizing a rare-disease awareness event, writing to legislators about disability benefits, or working with your workplace HR to establish flexible schedules. Advocacy channels patients’ frustrations into constructive action and builds community power.

Short Definition:
Helping others with no expectation of personal gain.

Long Definition + Context:
Acts like sharing low-histamine recipes or fetching water for a dizzy POTS friend foster community resilience. Altruism benefits both giver and receiver, strengthening bonds and mood.

Short Definition:
Patterns of relating shaped by early caregiver bonds (secure, anxious, avoidant, disorganized).

Long Definition + Context:
Influence how patients seek support or withdraw during flares. Recognizing your style (e.g. anxious attachment leading to reassurance-seeking) guides tailored, compassionate interactions.

Short Definition:
How we explain behavior by attributing it to personality or circumstance.

Long Definition + Context:
Interpreting a peer’s delayed reply as “they’re busy, not uncaring” fosters empathy; avoiding snap judgments reduces conflict in support networks.

Short Definition:
Expected patterns of action in a group (e.g., leader, supporter).

Long Definition + Context:
Clarifying who shares resources, who offers emotional support, and who coordinates logistics prevents burnout and ensures balanced group functioning.

Short Definition:
Personal limits that protect one’s energy and well-being.

Long Definition + Context:
Saying “I need to cut this call short” or “please no unsolicited advice” preserves spoons and prevents resentment, enabling sustainable relationships.

Short Definition:
Reduced likelihood of help when others are present.

Long Definition + Context:
In group settings, people may assume “someone else will assist.” Teaching direct requests (“You, please help”) ensures timely support during an orthostatic fainting episode.

Short Definition:
Emotional and practical assistance for those caring for chronically ill loved ones.

Long Definition + Context:
Spouses, parents, or friends need their own peer networks and respite. Dedicated forums and groups help them share coping strategies and avoid isolation.

Short Definition:
Imagining the worst-possible outcome.

Long Definition + Context:
Thinking “This flare will ruin my life” amplifies pain and anxiety. Cognitive reframing (“I’ve managed before and have tools”) interrupts the cycle of stress and mast-cell activation.

Short Definition:
The network of individuals—medical and personal—who support a patient’s care.

Long Definition + Context:
Includes doctors, therapists, family, and friends. Recognizing each as part of your team encourages collaboration, shared decision-making, and consistent support.

Short Definition:
Discomfort from holding conflicting beliefs or behaviors.

Long Definition + Context:
For example, valuing rest but pushing through flares to socialize creates tension. Awareness helps align actions with health priorities and self-compassion.

Short Definition:
Reframing thoughts to alter their emotional impact.

Long Definition + Context:
Shifting “I’m stuck at home” to “I can use this time for gentle self-care” lowers cortisol, reduces flare risk, and supports mental well-being.

Short Definition:
Tendency to bond with those whose traits complement one’s own.

Long Definition + Context:
Pairing a cautious patient with an optimistic buddy balances encouragement and safety—leveraging each other’s strengths for mutual support.

Short Definition:
Adjusting beliefs or behaviors to match a group.

Long Definition + Context:
While healthy norms (pacing reminders) can emerge, uncritical conformity to untested therapies can be harmful. Encouraging evidence-based discussion prevents risky trends.

Short Definition:
Favoring information that confirms existing beliefs.

Long Definition + Context:
If you believe only one diet helps, you may ignore other effective approaches. Actively seeking diverse perspectives leads to more accurate self-management.

Short Definition:
Strategies individuals use to manage stress and adversity.

Long Definition + Context:
Spanning problem-focused (planning rest), emotion-focused (journaling), and meaning-focused (advocacy), a varied toolbox prevents burnout and fosters resilience.

Short Definition:
Loss of self-awareness in groups, leading to atypical behavior.

Long Definition + Context:
On anonymous forums, people may share unhelpful or harsh advice. Moderation and accountability measures (real names, clear guidelines) maintain a supportive atmosphere.

Short Definition:
Official adjustments enabling equal participation in school, work, or public life.

Long Definition + Context:
Flexible hours, remote options, or ergonomic setups under ADA support continued engagement, preserving identity and peer connections.

Short Definition:
Starting with a large request, then a smaller one to gain compliance.

Long Definition + Context:
Requesting daily check-ins (large) followed by just a 5-minute weekly call (small) increases the chance friends will agree to the smaller ask, securing needed support.

Short Definition:
Automatic mirroring of others’ emotions.

Long Definition + Context:
One member’s panic can spread through a chat. Facilitators modeling calm, solution-focused language help stabilize group mood and reduce collective anxiety.

Short Definition:
Managing one’s emotional responses in healthy ways.

Long Definition + Context:
Labeling emotions (“I feel frustrated”) and employing tools like breathing or self-compassion diminishes stress hormones and mast-cell flares.

Short Definition:
Understanding and sharing another’s emotional experience.

Long Definition + Context:
Statements like “I can’t imagine your pain but I’m here” validate suffering. Empathy strengthens bonds, reduces shame, and fosters supportive environments.

Short Definition:
Frequent acute stress episodes without adequate recovery.

Long Definition + Context:
Back-to-back flares or POTS events without rest magnify central sensitization and mast-cell reactivity. Emphasizing pacing and scheduled relaxation is critical.

Short Definition:
Gaining compliance with a small initial request followed by a larger one.

Long Definition + Context:
Asking a friend to read one article, then later to co-host a call, gradually builds social-support involvement without overwhelming them.

Short Definition:
The bonds that hold a group together.

Long Definition + Context:
Shared rituals—weekly check-ins or celebrating small wins—enhance cohesion, leading to stronger emotional support and adherence to healthy norms.

Short Definition:
Discussion-driven amplification of group’s initial tendencies.

Long Definition + Context:
A mild skepticism about supplements can escalate into outright rejection. Introducing balanced evidence prevents extreme swings and maintains nuanced perspectives.

Short Definition:
Prioritizing harmony over critical evaluation in a group.
Long Definition + Context:
Unanimity pressures can cement untested advice. Inviting expert input or devil’s-advocate roles safeguards against harmful consensus.

Short Definition:
Patient-created humor expressing shared experiences.

Long Definition + Context:
Darkly comic memes (e.g., “My joints are auditioning for Mr. Potato Head”) validate lived realities, foster camaraderie, and lighten emotional load.

Short Definition:
A condition not visibly apparent but causing significant impairment.

Long Definition + Context:
EDS/POTS/MCAS patients often face skepticism (“You look fine!”). Embracing this identity educates others about hidden symptoms and fosters empathy and accommodations.

Short Definition:
Slang for rare-disease patients who defy common diagnostic patterns.
Long Definition + Context:
Reclaiming “zebra” unites EDS communities, raises awareness, and urges providers to consider rare presentations—transforming perceived oddity into pride. At Connective Wellness, we steer away from using “zebra” because in medical circles it’s meant to describe any rare disease—not just EDS—and over time the term has become so tightly associated with EDS that it no longer reflects that broader meaning. We want to honor the original intent and be inclusive of everyone facing a rare condition.

Short Definition:
Perceived “us” vs. “them” distinctions.

Long Definition + Context:
Strong in-group identity (EDS community) reduces isolation but may “other” adjacent conditions. Promoting inclusive dialogue across diagnoses builds broader solidarity.

Short Definition:
Conforming because one believes the group knows best.

Long Definition + Context:
New members may adopt veteran tips (“Drink 3 L water daily”) assuming correctness. Coaching verification with clinicians balances peer wisdom and medical advice.

Short Definition:
Confidence in another’s reliability and goodwill.

Long Definition + Context:
Built through consistent follow-through (e.g., reliable check-ins) and respectful communication. High trust reduces vigilance, frees mental energy, and deepens social bonds.

Short Definition:
Unwanted loneliness (isolation) vs. chosen alone-time (solitude).

Long Definition + Context:
Isolation fuels depression and physical decline; solitude can be restorative. Teaching this distinction helps patients seek connection when lonely and embrace peaceful alone moments guilt-free.

Short Definition:
Digital platforms where patients connect, share, and support.

Long Definition + Context:
Facebook groups (“EDS + Chronic Pain”), Reddit forums, and hashtags (#MastCellActivation) provide 24/7 empathy, tips, and humor. While vetting medical advice is vital, these virtual tribes often become lifelines.

Short Definition:
Actively speaking up for one’s healthcare and personal needs.

Long Definition + Context:
From requesting specific tests to lobbying for policy change, advocacy transforms helplessness into agency. Joining organizations amplifies individual voices and improves care access.

Short Definition:
Speaking up for one’s own needs, rights, and preferences.

Long Definition + Context:
Self-advocacy involves learning about your condition, communicating clearly with providers (“Please test for my dysautonomia symptoms”), requesting accommodations (ADA paperwork), and asserting boundaries with friends or employers. Strong self-advocacy reduces helplessness, ensures you receive appropriate care, and models assertiveness that others (family, clinicians) come to respect.

Short Definition:
Communicating limits around time, energy, and emotional investment.

Long Definition + Context:
Saying “I’ll need to leave in 30 minutes” or “I prefer texts to long calls” preserves spoons and prevents burnout, enabling healthier, more sustainable connections.

Short Definition:
Guidance from someone further along in the illness journey.

Long Definition + Context:
Hearing “I once felt exactly how you do…” from a mentor offers practical advice and hope—transforming isolation into solidarity and demonstrating adaptation is possible.

Short Definition:
A metaphor for one’s finite capacity for social interaction.

Long Definition + Context:
Just like spoons, social battery drains with conversation and events. Acknowledging limits (“I have two hours today”) helps friends plan shorter, more meaningful visits.

Short Definition:
Resources—information, support—gained through social networks.

Long Definition + Context:
A well-connected patient can quickly learn about new treatments or coping strategies. Investing in network building—both giving and receiving—yields valuable resources for future flares.

Short Definition:
One’s self-concept derived from group membership.

Long Definition + Context:
Identifying as an “EDS warrior” or “POTS advocate” fosters pride and community. Encouraging multiple identities (artist, friend, advocate) prevents overidentification and supports broader self-worth.

Short Definition:
Learning behaviors by observing and imitating others.

Long Definition + Context:
Seeing a peer calmly manage a syncopal episode teaches pacing more effectively than lectures. Incorporating peer demonstrations and modeling videos leverages this principle.

Short Definition:
Emotional, informational, and practical assistance from others.

Long Definition + Context:
From hydration reminders to shared research, robust support networks correlate with lower stress hormones, improved mast-cell stability, and better mental health.

Short Definition:
Oversimplified, generalized beliefs about a group.

Long Definition + Context:
Assuming “MCAS means just allergies” ignores complexity. Countering stereotypes with nuanced education fosters accurate, empathetic understanding.

Short Definition:
A meeting—virtual or in-person—of people sharing a condition for mutual aid.

Long Definition + Context:
Formal chapters or patient-led forums provide tips, validation, and empathy—critical antidotes to the loneliness of rare, invisible illnesses.

Short Definition:
Confidence in another’s reliability and goodwill.

Long Definition + Context:
Built through consistent follow-through, transparent communication, and boundary respect. Trust lowers vigilance, conserves energy, and deepens collaborative care relationships.