Chronic pain and fatigue affect millions of disabled people. They're often invisible, frequently dismissed, and deeply impact daily life. Living with pain and fatigue requires developing strategies, finding knowledgeable providers, and often fighting to be believed.
This page centers disabled people's expertise—those living with chronic pain and fatigue know more about managing it than anyone.
Chronic pain: Pain lasting more than 3-6 months, or persisting beyond expected healing time. Not just acute pain that lingers—chronic pain involves nervous system changes that make pain persist.
Chronic fatigue: Persistent, overwhelming exhaustion that isn't resolved by rest. Different from normal tiredness—it's a profound depletion that can be disabling in itself.
Chronic pain and fatigue occur across many conditions:
Pain conditions: Fibromyalgia, chronic regional pain syndrome (CRPS), chronic low back pain, neuropathic pain, endometriosis, interstitial cystitis, chronic pelvic pain, arthritis, migraines, trigeminal neuralgia, post-surgical chronic pain.
Fatigue conditions: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, multiple sclerosis, lupus and other autoimmune conditions, post-viral syndromes including Long COVID, depression and other mental health conditions, sleep disorders, chronic infections.
Conditions with both: Many conditions involve both significant pain and fatigue—they often travel together.
Disabled people describe:
Medications:
Procedures:
Physical approaches:
Psychological approaches (not because pain is "in your head"—pain is real, but the brain processes it):
Disabled people have developed countless strategies:
Pacing: Balancing activity and rest, not pushing through to crash later. This is learned skill, not giving up.
Activity modifications: Different ways of doing things that reduce pain triggers.
Environment modifications: Ergonomic setups, temperature control, reducing sensory triggers.
Movement: Gentle movement often helps chronic pain (though timing and type matter). Swimming, gentle yoga, walking, stretching—what works varies by person.
Sleep: Pain disrupts sleep; poor sleep worsens pain. Sleep hygiene and treatment of sleep disorders can help.
Stress management: Stress amplifies pain. Techniques vary—what works for you matters.
Distraction: Not denial, but redirecting attention. Activities, social connection, entertainment.
Tracking: Some people find tracking symptoms helpful to identify patterns; others find it makes them focus more on pain.
Treatment depends on underlying cause:
ME/CFS: No approved treatments; pacing is key; some benefit from low-dose medications.
Autoimmune conditions: Treating underlying disease may help fatigue.
Sleep disorders: Treatment of sleep apnea, insomnia, etc.
Thyroid and hormonal: Correction of deficiencies.
Anemia: Iron supplementation if indicated.
Depression: Antidepressants if mood is a factor (but don't assume fatigue is "just depression").
Pacing and energy management: The most important tool. Don't "push through"—it often backfires.
The spoon theory: Many disabled people use "spoons" as a metaphor for limited energy. You start the day with limited spoons; each activity costs spoons; you can't borrow from tomorrow without consequences.
Rest before you need it: Preventive rest, not just reactive rest.
Prioritizing: What actually matters? What can be let go, delegated, or simplified?
Good enough: Perfectionism is expensive. Lowering standards for low-priority things preserves energy for what matters.
Saying no: Protecting your energy means declining things—this is self-care, not selfishness.
Planning for bad days: Build flexibility into your life for when fatigue is worse.
Environmental adaptations: Reduce standing, reduce stairs, batch tasks, use mobility aids, automate what you can.
PEM is a worsening of symptoms after physical, cognitive, or emotional exertion. It's a hallmark of ME/CFS but occurs in other conditions too.
Key features:
If you have PEM, standard advice to "exercise more" can be harmful. Graded exercise therapy (GET) has been shown to harm many ME/CFS patients.
Pacing—staying within your "energy envelope"—is essential for managing PEM.
Healthcare providers often don't understand PEM. Explain:
Chronic pain and fatigue are often invisible. Disabled people routinely experience:
This is worse for:
Documentation: Keep records of symptoms, impacts, what you've tried.
Be specific: Describe functional impacts (can't work, can't care for children) not just pain levels.
Bring someone: A partner, friend, or advocate can corroborate and witness.
Ask questions: "What else could this be?" "What would you do next if my symptoms don't improve?"
Get a second opinion: If a provider dismisses you, find another.
Know that you deserve care: Your pain is real. Your fatigue is real. You're not making it up.
Possible workplace accommodations include:
Chronic conditions affect relationships:
Peer support from others who understand is invaluable:
Black people, Indigenous people, and other people of color experience:
Who's organizing: Organizations led by disabled people of color, healthcare equity advocates.
Women's pain is systematically dismissed:
Who's organizing: Women's health advocates, endometriosis organizations.
LGBTQ+ people may face:
Lower-income people face:
Keep trying. Ask in patient communities for recommended providers. Consider telehealth specialists. Bring documentation of symptoms and impacts. You can also bring someone to appointments for support.
This is happening due to opioid restrictions. Ask about alternatives. Get a pain specialist referral. Consider a patient advocate. Know your rights—tapering should be gradual and with your input.
This is classic boom-bust cycle. Pacing is the answer, but it's hard to learn. Resources on ME/CFS pacing apply to many conditions. Consider occupational therapy focused on energy management.
Education helps. Share spoon theory, personal stories, or clinical information. Set boundaries about what you can and can't do. Therapy (individual or family) can help communication.
This grief is real and valid. Many disabled people experience ongoing grief for lost abilities. Therapy can help. Peer support from others who've been through it helps. Be gentle with yourself.
Do you live with chronic pain or fatigue? Have strategies that help? Found good providers?
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We especially welcome:
This page centers disabled people's expertise. People living with chronic pain and fatigue are the experts on their own bodies and experiences.
Last updated: November 2025