Body integrity dysphoria

Overview

People with BID often feel incomplete with a healthy limb or body part.

Therapy can reduce distress; no one should try to harm a body part themselves.

Symptoms

Common signs:

• Distress about a body part

Less common

• Anxiety
• Depression

When to get medical care

Causes

Unknown.

Does it spread or run in families?

• It isn't contagious. You can't catch it from someone else.

Who is more likely to get it

• Usually starts in childhood or teens

Possible complications

• Self-harm (hurting yourself): Some people try to injure the limb

Diagnosis

A clinician asks about your symptoms and may order tests.

The exam

A physical exam.

Treatment

Treatment depends on the cause and how severe it is.

Self-care

• Talk with a mental health professional
• Find a therapist with experience

Prevention

To lower your risk or prevent problems:

• Early support

Which doctor treats this

• Start with your primary care provider (family doctor or internist).
• They may send you to a psychiatrist (for medicine) and a psychologist or licensed therapist (for talk therapy).

Living with it

• Keep a regular sleep, meal, and activity routine.
• Tell one trusted person how you're doing, and plan who to call on hard days.
• Limit alcohol and drugs. They often make symptoms worse.
• In a crisis, call or text 988 any time.
• Long-term illness can affect mood. Tell your doctor if you feel down or anxious.

Support groups and helplines

• NAMI (National Alliance on Mental Illness): Free support groups and a helpline (1-800-950-6264) for people and families.
• 988 Suicide & Crisis Lifeline: Call or text 988 any time for free, private support in a crisis.
• Genetic and Rare Diseases Information Center (GARD): Free NIH information on rare diseases, including where to find experts and patient groups.
• National Organization for Rare Disorders (NORD): Patient groups, help finding care, and aid programs for rare diseases.

Back to school, work, or sports

• Most people can keep working or going to school.
• Ask about changes that help, like extra breaks or a flexible schedule. Workers may be covered by the ADA. Students may get a 504 plan.
• The Family and Medical Leave Act (FMLA) may let you take unpaid time off for treatment without losing your job.

Children, pregnancy, and older adults

• Adults: Often present since childhood.

Pregnancy and breastfeeding

• If you're pregnant or planning to be, tell your prenatal provider about this condition.
• Many mental health medicines are used safely in pregnancy. Stopping suddenly can cause a relapse.
• Don't start or stop any medicine on your own. Some are safe in pregnancy and some need to be changed.
• Ask before taking any pain reliever. The FDA advises avoiding ibuprofen and naproxen after 20 weeks unless your doctor says to.
• Mood problems can start during or after pregnancy. Postpartum Support International: 1-800-944-4773.
• Breastfeeding: Most medicines are fine, but ask. The NIH LactMed database lists what's known about each one.

For caregivers

• Listen without judging, and let them know you care.
• Encourage treatment, but don't force it unless they're in danger.
• If they talk about suicide, call or text 988 with them.
• Take breaks and ask for help. Caregivers need care too.

Outlook

Support can ease distress.

Therapy can help.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse

Questions to ask

• What's causing this?
• What treatment do you recommend?
• Is there a specialist in this condition?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on Body integrity dysphoria