Living with Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Multifocal Motor Neuropathy (MMN), or related conditions can take a toll on both physical and mental well-being. While treatment often focuses on managing neurological symptoms, the impact on mental health is equally important.
Join us for this insightful webinar exploring the connection between neurological conditions and mental health, and learn more about the integrated care “team” approach to healthcare.
Introduction:
Eric Christian, MAEd, LCMHC, NCC, serves as the Director of Behavioral Health Integration at Community Care of North Carolina (CCNC). In this role, he leads initiatives to embed behavioral health services within primary care settings, aiming to enhance access and outcomes for patients across the state. Christian has been instrumental in implementing collaborative care models that integrate behavioral health care managers and psychiatric consultants into primary care practices, particularly benefiting rural and underserved communities. His work emphasizes early screening, prevention, and comprehensive support to address both mental and physical health needs.
What is whole-person care, and why is it important in managing chronic illnesses like GBS, CIDP, and MMN?
- Whole-person care is a patient-centered approach that addresses physical, behavioral, emotional, and social well-being to improve overall health.
- It integrates medical, behavioral, and social care to treat the whole person, not just isolated symptoms or conditions.
- Mental health and stress can directly impact physical health and symptom severity in GBS, CIDP, and MMN.
- Psychiatric medications may have side effects that influence the course or management of these neurological conditions.
- Non-medicinal pain management strategies—such as mindfulness, meditation, breathing techniques, and sleep hygiene—can reduce pain or its intensity.
- Negative thinking and catastrophizing can increase stress and disrupt sleep, potentially worsening symptoms of GBS, CIDP, and MMN.
What types of services are typically included in a whole-person care approach?
- In addition to medical care from a primary care provider or neurologist, behavioral health strategies can support a whole-person care approach.
- Techniques such as breathing exercises, mindfulness, relaxation practices, and sleep hygiene may help manage symptoms and improve well-being.
- Cognitive Behavioral Therapy (CBT), delivered by a licensed therapist, can assist individuals in coping with life changes and emotional trauma related to GBS, CIDP, or MMN.
- Behavior change techniques within CBT can promote resilience and support mental and emotional adjustment during recovery.
How can healthcare providers effectively coordinate care across disciplines?
- Primary care providers and specialists (like neurologists) often use behavioral health screening questions to identify when patients may benefit from behavioral health support.
- Behavioral health strategies can improve a patient’s sense of well-being and may also reduce symptom intensity, such as pain.
- Providers can refer patients to behavioral health professionals when a need is identified.
- Follow-up appointments may include check-ins on whether the patient accessed services and how effective they found them.
- Patients can play an active role by initiating these conversations and informing their providers about others involved in their care.
What benefits or improved outcomes have you seen from using a whole-person or integrated care model?
- Greater understanding of peripheral neuropathies can enhance the care and support provided by the entire healthcare team.
- Patients are multi-dimensional—not defined solely by their condition—so care should address medical, behavioral, and social needs.
- A coordinated, whole-person approach leads to more comprehensive and effective outcomes.
- Behavioral health clinicians and physical/occupational therapists can better align treatment plans when educated about neuropathies.
- Cross-disciplinary knowledge sharing improves collaboration and care consistency across the patient’s support network.
In your experience, what are the key advantages of working with a multidisciplinary care team?
- Patients feel more supported when both physical and mental health needs are addressed.
- Primary care and specialists often lack time or expertise to fully address behavioral health concerns.
- A multidisciplinary team—including behavioral health therapists, PT/OTs, pain specialists, and alternative medicine providers—can offer more holistic support.
- Care coordination improves when providers have consent to communicate and share relevant treatment information.
- Patients often act as the bridge, sharing updates that can prompt collaborative care and record exchange.
From your perspective as both a professional and a caregiver, who do you consider essential members of a care team for someone living with CIDP or a related condition?
- Family members (spouse, children, close friends) are crucial in supporting the patient, as GBS, CIDP, and MMN affect the entire family, not just the patient.
- The primary care provider coordinates overall health and is a key part of the care team.
- The neurologist manages the physical aspects of care for neurological conditions.
- Behavioral health providers (counselors/therapists) are essential but often overlooked in care planning.
- Physical therapists, occupational therapists, and alternative therapies complete the care team.
- The patient may need to initiate connections and discussions across provider teams to ensure coordinated care.
What have you personally learned about whole-person care through your experience supporting a loved one with CIDP?
- Full support from family and close friends has helped my wife Diana, cope with CIDP, easing anxiety and reinforcing that she isn’t facing this journey alone.
- Flexibility as a care team enhances quality of life, such as adapting activities like hiking to simpler outings when needed.
- Adjusting plans based on how Diana feels that day promotes comfort and well-being.
- Diana’s family and friends have educated themselves about her condition, fostering understanding and a sense of security within our support system.
What mental health challenges are most common for individuals living with GBS, CIDP, or MMN?
- Anxiety and depression often arise from feelings of loss of control, uncertainty, and the stress of a life-interrupted.
- Patients may have been pre-screened for depressive symptoms during medical visits, indicating the provider’s interest in helping find appropriate treatment if needed.
How can patients cope with the emotional highs and lows of diagnosis, treatment, and recovery?
- Recognize that similar feelings have been experienced before and that this challenging time will pass and evolve.
- Remind yourself of your strength and the resilience you’re building throughout diagnosis, treatment, and recovery.
- Lean on supportive friends, family, and local GBS-CIDP Foundation chapter members for encouragement.
- Seek help from a behavioral health provider and review your behavioral health benefits/costs.
- Use online directories like Psychology Today, TherapyDen, Zocdoc, GoodTherapy, and SAMHSA Treatment Locator to find therapists, and consider factors like insurance, therapist fit (gender, approach, feedback), and cost.
What strategies are most effective for managing anxiety, depression, or other mood changes associated with chronic illness?
- Know your baseline and co-monitor changes with trusted housemates or friends, but have a pre-planned discussion to ask for their support during tough moments.
- Track your mood like you track neuropathy progress to avoid underestimating or overestimating good/bad days, which can complicate treatment decisions.
- Find peer support through the foundation to connect with others who are further along in their journey and can share helpful insights.
How can someone maintain hope and optimism during a long and uncertain recovery journey?
- Stay updated on research related to your illness and connect with others facing similar challenges through local foundation chapters, message boards, and support groups.
- Do what you can to stay connected to activities you enjoy, helping maintain a sense of normalcy and well-being.
What are some healthy coping mechanisms for dealing with chronic fatigue, pain, and limitations?
- Maintain flexibility in plans by having a Plan B, pacing activities, and saving energy for the most fulfilling ones.
- Use relaxation techniques and find activities that are pleasurable without draining energy.
How can someone maintain a sense of normalcy and purpose in everyday life while living with these conditions?
- Find joy and purpose in activities that are attainable, even if they are different from what was previously done.
- For example, if someone was a classroom mom, they could support the school by contributing from home in ways that require less energy but still make a meaningful impact.
What role does mental health play in physical recovery, and how do mental and physical symptoms interact?
- Mental health and physical health influence each other, so addressing both is crucial to maximizing overall well-being.
- Mental health distress can make it harder for individuals to maintain physical health and follow through with related treatments.
How can patients best communicate their emotional and psychological needs to their care team?
- Be honest about your feelings and ask for help when needed in specific areas.
- Avoid placing blame on the care team; instead, focus on clearly communicating your needs.
Can medications or treatments for GBS/CIDP/MMN impact a person’s mental health?
- Medications often have side effects that can impact mental health, so it’s important to report side effects to your primary care provider or specialist for potential adjustments.
- Physical therapies, alternative therapies, and behavioral health therapy can all have a positive impact on mental health and boost patient confidence.
Are there specific therapies or techniques that you’ve found especially helpful for patients with these conditions?
- Cognitive Behavioral Therapy (CBT) is the gold standard for managing stress, PTSD, depression, and anxiety, along with psychoeducation for both the patient and their family.
- CBT derivatives such as Trauma-Focused CBT, Rational Emotive Behavior Therapy, Acceptance and Commitment Therapy (ACT), and EMDR can help with trauma, pain, anxiety, and irrational beliefs.
- Medications can be effective but work best when combined with psychotherapy, as medications alone cannot provide the tools needed for addressing thoughts and engaging socially.
- In cases where substance use (alcohol or opioids) becomes a concern, substance use clinics may offer specialized treatment and related medication options.
What support groups, peer networks, or community resources would you recommend for patients and their families?
- Join the GBS-CIDP Foundation and a local chapter to connect with others facing similar challenges, share resources, and feel supported.
- Social media groups can be another way to connect with people experiencing similar illnesses.
- Community resources like church groups, volunteer organizations, or interest-based groups provide opportunities for connection.
- Reach out to your care manager through your health insurance or hospital/rehab social worker for additional support and resources.
What are some common signs of caregiver stress or burnout?
- Caregivers may experience stress, poor sleep, and behavioral health symptoms like depression, anxiety, and isolation.
- Warning signs include giving up activities that bring joy and relaxation, and feeling overwhelmed most of the time.
How can caregivers support their own mental and emotional well-being while caring for someone with a chronic condition?
- Caregivers should follow the same self-care guidance given to patients.
- They can reach out to family and friends for support and connection.
- Join caregiver support groups to share experiences and reduce isolation.
- Access behavioral health therapy to care for their own mental and emotional well-being.
What kinds of support systems or resources are available for caregivers?
There are local support groups as well as online support groups and fellow caregivers within a chapter of the GBS and CIDP foundation
Are there practical ways for caregivers to access respite care or short-term relief from their duties?
- Community organizations may offer respite care or support services for caregivers.
- Check health insurance policies for available caregiving support and coverage.
- Ask family and friends to help with caregiving tasks to give the primary caregiver a needed break.
From your own experience, what’s the most valuable advice you would offer to other caregivers of someone with CIDP or similar conditions?
Connect with people who support you on a regular basis and allow them to provide feedback when and if they notice you mood has changed (for better or worse).
Final Takeaways!
Whole-Person Care at a Glance
- Treats the whole person—mind, body, and social needs.
- Mental health impacts physical recovery; both must be addressed.
- Mindfulness, CBT, and flexible routines help manage symptoms and stress.
Team Approach
- Care teams should include PCPs, neurologists, therapists, PT/OT, and family.
- Coordinated care improves outcomes and quality of life.
- Patients often guide communication across providers.
Caregiver Tips
Stay connected, ask for help, and maintain your own well-being
Caregivers need support too—watch for burnout.
Relevant Resources:
Centers of Excellence: https://www.gbs-cidp.org/support/centers-of-excellence/
Doctor to Doctor Consult: https://www.gbs-cidp.org/doctor-to-doctor/
Find our Awardee’s Research Here: https://pubmed.ncbi.nlm.nih.gov/
Visit our Research Portal Here: https://www.gbs-cidp.org/research-portal/