The CIDP Mindset: How to Manage ’Relapse Anxiety’ and Medical Trauma
Health ConditionsAutoimmune Diseases

The CIDP Mindset: How to Manage ‘Relapse Anxiety’ and Medical Trauma

The CIDP Mindset: How to Manage ‘Relapse Anxiety’ and Medical Trauma
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Published on February 10, 2026
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Life with chronic inflammatory demyelinating polyneuropathy (CIDP) can feel like a minefield of anxiety triggers. From receiving your diagnosis, to adjusting your daily life to cope with symptoms, to waiting for your next relapse, CIDP and its treatment can lead to medical trauma and ongoing anxiety.

But you can decrease CIDP anxiety with techniques to stay grounded when you’re dreading an appointment or the return of symptoms.

The Trauma of Diagnosis and Waiting for Relapse

The news that you have a life-changing chronic illness can feel traumatic, and some people have symptoms of post-traumatic stress disorder (PTSD) after diagnosis.

 The path to a CIDP diagnosis may include nerve conduction tests, an MRI, or a spinal tap (lumbar puncture) — all of which can cause stress and anxiety.

Unpredictable Symptoms and PTSD

Once you have your diagnosis, the fluctuation, progression, and unpredictability of symptoms can cause continued psychological distress, says Kunal Desai, MD, a neurologist with Yale New Haven Health in Connecticut and an assistant professor of neurology at Yale School of Medicine. You might find that certain reminders of your diagnosis and treatment can trigger upsetting thoughts and feelings; for example, one person with CIDP described feeling symptoms of PTSD when putting on her hospital bracelet before checkups or treatment.

Isolation and Loss of Independence

Beyond painful symptoms, losing independence can also contribute to anxiety in CIDP, says Nona Kocher, MD, a psychiatrist in private practice in Miami. “Experiencing difficulty with walking or doing daily tasks can make those with CIDP feel helpless or reliant on others, which can lead to negative feelings and emotions.” Your physical limitations may also prompt you to avoid social situations, leading to loneliness and emotional strain, says Dr. Kocher.

Shared Symptoms Between Healing and Relapse

If you worry about CIDP symptom relapse, any tiny tingle can launch a wave of anxiety. But it’s normal for healing nerves to be more sensitive and “fire” more frequently.

 This feeling could mean your nerves are recovering, but it could also be a sign of relapse. So it's understandable for the sensation of “pins and needles” (paresthesia) to cause concern.

How to Avoid ‘Scan-xiety’ and Neurology Office Dread

The anxiety you feel before neurology appointments can overwhelm anyone, but the tips below can help you stay calm before and during your next visit.

Prepare for Your Next Appointment

“Before your appointment, take some time to think about what’s on your mind and what you hope to get out of the visit,” says Kocher, who recommends writing down your questions beforehand. If you tell your provider about your worries, they may be able to offer some solutions, like numbing before a shot or relaxing medication before an MRI.

Bring Someone With You

If you can, bring a family member or close friend to your provider visits or treatments for support and distraction, says Kocher. “Their presence can make the appointment feel less overwhelming and provide reassurance.”

Bookend Your Appointment With Rest

When you schedule your next appointment or treatment, add some extra time before and after to read a book, watch a movie, or take a nap. “Planning some downtime or relaxation activity prior to or after appointments and treatment sessions can alleviate stress,” says Dr. Desai.

Use Grounding Techniques

During a test or infusion session, or in your provider’s waiting room, you can use grounding methods to ease you through anxiety.

Grounding techniques can include these options:

  • Slowly trace the outline of your hand with the opposite finger, inhaling as you trace up each finger, and exhaling as you trace down.
  • Take a deep breath and pull up your shoulders, then exhale quickly and drop your shoulders.
  • Flex the toes of your right foot, then left foot, and repeat.
  • Name five things you can see, four you can feel, three you can hear, two you can smell, and one you can taste.
  • Focus on a happy memory by picturing it and asking yourself how it looked, tasted, smelled, or sounded.

Try to focus on the immediate purpose of the visit to limit “what if” thinking and catastrophizing, says Simon Faynboym, MD, a psychiatrist and the medical director at Neuro Wellness Spa in Los Angeles.

How to Ease Anxiety in CIDP

You can manage CIDP anxiety with techniques like cognitive behavioral therapy (CBT), mindfulness, journaling, and self-compassion.

Cognitive Behavioral Therapy

“CBT helps people with CIDP identify (unrealistic) anxious thoughts about their illness and replace them with more realistic, balanced thinking,” says Kocher. This therapy also provides tools for managing stress, like planning for flare-ups or problem-solving daily limitations, says Kocher. If you’d like to explore CBT, your provider can recommend a mental health professional for you.

Belly Breathing

Anxiety can keep your fight-or-flight response on high alert, but deep breathing exercises can activate another part of your nervous system that calms you down. For example, slow belly (diaphragmatic) breathing activates your vagus nerve, which helps you relax.

To try one type of belly breathing called 4-7-8 breathing, follow these steps:

  • Breathe in through your nose for four seconds.
  • Hold your breath for seven seconds.
  • Breathe out through pursed lips for eight seconds.
  • Repeat.

Mindfulness

Kocher also recommends using mindfulness to focus on the present moment and observe your body and emotions without judgment. When you practice mindfulness regularly, you can retrain your brain to respond less to anxiety triggers.

“Mindfulness builds tolerance for uncertainty by training attention to the present moment and decreases the urge to constantly scan the body for symptoms,” says Dr. Faynboym.

Self-Compassion

Spilling a drink or breaking a plate because of muscle weakness can flood you with critical thoughts, but if you notice these feelings arise, allow space for self-compassion.

 You can choose empathy for yourself by speaking or writing kind words about your body.
For example, instead of saying “I can’t believe I dropped that,” say “It makes sense that my body couldn't hold on to that plate.” Offer yourself kindness by relaxing your muscles, rubbing sore shoulders, or gently placing your hands on your temples.

It can also be helpful to recognize your shared humanity with countless people who have had similar struggles, and may be struggling even now.

Keep a Journal

Desai recommends keeping a daily journal of your symptoms. “Patients can become hyper-focused on daily limitations and not notice that they have gradually improved over months,” he says.

Find Support

CIDP support groups give you a place to share information, offer and receive compassionate encouragement, and feel less alone in your diagnosis.

 It’s also important to see a mental health professional who understands chronic neurological conditions. These providers can help you navigate anxiety surrounding CIDP and tailor treatments for you.

Supporting the Caregiver: Managing Shared Anxiety

Caregivers can also feel anxiety about their loved one’s illness, and they need support, too. To relieve anxiety as a caregiver, you can:

  • Ask for help from other loved ones.
  • Make time for self-care.
  • Learn more about CIDP.
  • Join a caregiver support group.
  • Listen to your loved one’s concerns.
  • Find ways to communicate if speaking isn’t an option (like vocabulary cards or a white board).

You can also help your loved one develop a flare plan: a clear set of steps to follow when symptoms suddenly worsen. That allows you to take action immediately rather than panicking about what to do, says Kocher. “It might include when to rest, which medications to take, or when to call a doctor.”

Knowing you have a systematic approach to treating CIDP flares can help alleviate anxiety, says Desai.

The Takeaway

  • Medical trauma from diagnosis and treatment, the unpredictability of CIDP symptoms, and the fear of relapse can all cause anxiety.
  • You can ease anxiety in CIDP with strategies like cognitive-behavioral therapy, belly breathing, mindfulness, self-compassion, and journaling.
  • Support groups can also help those with CIDP and their caregivers cope with neurological symptoms and lessen anxiety.

Resources We Trust

EDITORIAL SOURCES
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Resources
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Seth Gillihan, PhD

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Seth Gillihan, PhD, is a licensed psychologist in private practice in Ardmore, Pennsylvania, who helps people find personal growth by making important changes in their thoughts and habits. His work includes books, podcasts, and one-on-one sessions. He is the the host of the Think Act Be podcast and author of multiple books on mindfulness and CBT, including Retrain Your Brain, Cognitive Behavioral Therapy Made Simple, and Mindful Cognitive Behavioral Therapy.

He completed a doctorate in psychology at the University of Pennsylvania where he continued as a full-time faculty member from 2008 to 2012. He has been in private practice since 2012.
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