Therapy Resources

In case of crisis, please call 911 immediately. The content on these pages is intended for informational purposes only and should not replace professional advice. Always consult your therapist, psychologist, psychiatrist, counselor, doctor, or other mental health professional for any questions or concerns before starting, stopping, or changing any treatment. This information does not constitute medical advice. SAF offers patient support but does not provide treatment recommendations. Mental health conditions are complex, and individual responses vary greatly. The best course of action is determined through physical examination and consultation with a qualified clinician. SAF suggests that this information may be a helpful tool for coping with scarring hair loss, but any treatment decisions should be discussed with your physician or healthcare provider.

This publication was developed by Chidubem Okeke, member of SAF’s Medical Student Committee and SAF Board Member Andrea Furgala, a licensed independent social worker in clinical practice.

Connecting with your Community

Social media offers a valuable way to connect with others who share similar experiences. Instagram and Facebook host several scarring alopecia communities. Here are a few to help you get started, but we encourage you to explore and find the resources that best fit your needs:

Here are some important considerations when choosing and working with a therapist:

  • Therapist's Philosophy: What is their general approach to helping clients? Do their methods align with what you’re looking for?
  • Openness to Feedback: Can the therapist acknowledge their own mistakes and seek feedback from you?
  • Relevant Experience: Do they have experience working with individuals who have similar issues to yours?
  • Collaborative Network: Are they connected with other mental health professionals who might provide additional advice or guidance?
  • Trust: Do you feel you can trust this therapist with your thoughts and feelings?

When working with a therapist:

  • Be Honest: It is crucial to be open and honest, both with yourself and with the therapist.
  • Express Yourself: Do not hold back your thoughts or feelings during sessions.
  • Clarify Misunderstandings: Speak up if the therapist misunderstands something important.
  • Engage Actively: Challenge yourself to think differently and be proactive in completing any homework or exercises they suggest.

Types of Therapy

Dialectical Behavior Therapy (DBT) helps patients identify thoughts, beliefs and assumptions that make their lives challenging and then learn different ways of thinking and reacting. For patients struggling with adaptive coping skills, DBT offers a toolbox in the areas of distress tolerance, emotion regulation, mindfulness, and interpersonal effectiveness. This is a great option for people who may have some pre-existing mental health struggles and are looking for a more intensive outpatient option. Click here to find a DBT specialist.

Acceptance and Commitment Therapy (ACT) is an action-oriented approach that encourages people to embrace their thoughts and feelings rather than fighting or feeling guilty for them. Embracing our feelings leads to embracing ourselves. Scarring alopecia is painful both emotionally and physically. So often, the path to emotional wellness for patients includes acceptance of both emotion and the disease itself. Click here to find an ACT specialist.

Mindfulness Based Stress Reduction (MBSR) therapy is an approach that combines meditation and yoga. It employs mindfulness meditation to alleviate suffering associated with physical, psychosomatic, and psychiatric disorders. We all know that stress exacerbates both our physical and emotional well-being. Many patients have experienced symptom flare-ups after experiencing an increase in stress. MBSR is a great option for scarring alopecia patients to learn to live in the moment and practice techniques to alleviate emotions related to chronic illness. While there is no central hub to find a MBSR therapist, a google search for Mindfulness Based Stress Reduction plus your location should lead you on the right path.

Somatic Experiencing Therapy (SE) is a treatment aimed at renegotiating your nervous system's response to pain and stress. Some of the research that has been done on the impact of SE on symptoms of PTSD and chronic pain is impressive. While this treatment often focuses on trauma (which nearly 60% of the population has), it can also be useful for people who are dealing with chronic illness in isolation of trauma. Click here to find a specialist.

Practice Encouraging Self-Compassion and Self-Love

A Growth Mindset: Believing in your talents, intelligence, and abilities may be developed by dedicating time & effort.
Mindful Breathing: Pay attention to the present moment without judgment.
Loving-Kindness Meditation: Soothe yourself with your own words.
Planning: Recognize when you are feeling overwhelmed and take things one small step at a time.
Self- Compassionate Letter: Use words of kindness to uplift yourself.
Journaling*: Writing can be a good way to recognize stressful triggers and the first step to overcoming them.
Self-Recognition: Acknowledge small accomplishments and praise yourself.
Self-Care: Taking care of your physical self by getting some exercise, or even a massage.
Practice Gratitude: Focus and remind yourself of the things in your life for which you are grateful.

Self-Compassion Helpful Links/Exercises:

  • UC Berkeley’s Greater Good in Action offers science-based, practical exercises to boost personal well-being - click here.
  • Dr. Kristin Neff, Co-Founder of the Center for Mindful Self-Compassion, offers guided exercises and tips to practicing self-compassion - click here.
  • Holly Orcutt, Ph.D, Professor of Psychology at Northern Illinois University, provides guided practices to focus on the relationships between thoughts, feelings and behaviors - click here.
  • Dr. Chris Germer, PhD, Clinical Psychologist at Harvard Medical School, offers mindful self-compassion training - click here.

Finding a Therapist

Online Therapy

Services may be offered through email, video conferencing, online chat, or internet phone. Online therapy may occur in real-time, such as in phone conversations and text messaging, or in a time delayed. format, such as through email messages.

Self-Guided Therapy

Although not optimal, this can be an option for those who cannot afford the time, cost, or inconvenience of meeting with a registered therapist.

Peer-to-Peer FAQs

Scarring alopecia can take its toll on individuals both physically and mentally. Our Peer-to-Peer FAQs will focus on common themes for those newly diagnosed, with online question and answer polling. Check back frequently, as we will be posting responses from other members of the scarring alopecia community.

Q: Living with scarring alopecia can get you down, so how do you stay positive?

  • I tell myself; I am not my hair.
  • I know with God all things are possible and I keep the faith that my hair will grow back.
  • Be grateful for the love of my husband and family.
  • Appreciate that my doctor caught my case early and I have a stylist that is educated on styling clients with hair loss.
  • I take inventory of all the amazing good that I have in my life - gratitude can overcome many obstacles. Often, we focus our attention on the worst things in our lives, leading to a bit of a downward spiral. It is fine to focus on what gets us down and seek ways to improve those things (be that our hair, our finances, our relationships, etc.) - but we must make a conscious effort (daily) to not "live" there. The best way I know to do that is to re-focus my energy on all the good. And it is there - we just have to "force" ourselves sometimes to see it. And the power of prayer is also real. Whatever your "prayer" habits look like - talking to your higher power, meditating, etc. - keep them front and center.
  • When I get discouraged, sad and say why me, I think about my friend who is dealing with and has been living with breast cancer for over 8 years. This condition will not kill me so for this I am grateful.

Suicide Prevention

There are many lifelines and online chat services that offer trained professionals to discuss your situation and direct you to resources in your area. If someone you know is in immediate danger, please call 911.

  • The National Suicide Prevention Lifeline: 1-800-273-8255 (available 24/7) or online chat.
  • The National Alliance on Mental Illness Helpline: 1-800-950-NAMI (M-F, 10 AM – 6 PM EST) Or email at info@nami.org or text “NAMI” to 741741.
  • For Veterans: 1-800-273-8255 (available 24/7) or online chat.
  • For LGBTQ affirming services: 866-488-7386 (24/7) or text “Trevor” to 1-202-304-1200 (M-F 3pm-10pm EST) or chat online.

When living with a rare disease, it is comforting to know that you are not alone. Each person’s journey with scarring alopecia is unique to them. Learn, be inspired, and get to know others through the connections at SAF. Click here!

*As of February 2022