How to Navigate the Emotional Challenges of Living With CIDP

The good news: By understanding how CIDP affects your mental health, you can take steps to feel your very best, emotionally and physically.

“There's a real loneliness, and often the people in your life don't realize quite how much you may be struggling,” says Katherine Berko, LCSW, a New York–based therapist. “Some people also feel shame and don’t even want others to know or see what’s happening.”

As a first step in feeling more connected, Berko recommends educating loved ones about your condition so they understand what you’re going through. This can be tricky, since you may feel like you shouldn’t have to (or just don’t have the energy to) go out of your way so others get it. But you don’t have to go to great lengths to help your loved ones understand. You can send them links to resources, like the care partner hub from the GBS-CIDP Foundation, or simply let them know it would mean a lot if they read up on CIDP.

Virtual options can also come in handy to combat loneliness when stuck at home. Berko recommends joining a virtual support group geared toward individuals who live with CIDP or other rare autoimmune disorders, as they will be able to empathize with what you’re going through. The GBS-CIDP Foundation offers virtual support groups and may have a local chapter in your area. Video calls and online multiplayer games can also be great options to keep in touch with loved ones when you can’t see them in person.

Things that once came easily, whether it’s a hobby or a household task, may now feel extremely challenging because of CIDP symptoms. Berko says that it’s natural to feel a sense of loss for the lifestyle you once had. Over time, it’s important to accept that your life looks different now and to avoid comparing yourself to others or to your life prediagnosis.

“Once you accept it, you can create a new way of making meaning in the world,” says Berko.

One helpful strategy is to focus on what you can do, even if it looks different than before. For example, you may still be able to walk your dog, just at a slower pace or with a few breaks along the way. Try to shift your focus to what you are capable of and notice the small positives that come from it — like spotting a community garden you hadn’t noticed before now that your walk is slow and intentional.

• Do light hand exercises to warm up your wrists before engaging in your hobby.
• Set small, achievable goals, like working on your creative project for 10 minutes a day.
• Use a hot or cool compress on swollen or painful joints before or while working on your hobby.
• Attach handles or grips to tools like paintbrushes, pens, and knitting needles.
• Ensure that you sit in a stable, comfortable posture.

If you are dealing with the emotional toll of slowly losing your independence, Berko says that the first step is to just sit with these feelings.

“Maybe that means getting in touch with your anger or getting in touch with your sadness — how devastating or disappointing it is to have limitations,” says Berko. Consider how you want to work through these feelings; maybe it’s talking to a loved one or a mental health professional, or journaling about your feelings (you can even use a voice recording app if writing or typing is too difficult).

Berko also recommends figuring out a way to become helpful to others despite your new limitations. “It can feel really good to help someone else, whether that’s volunteering or getting a pet that you can take care of,” says Berko.

Samantha Hill, LCSW, a therapist based in New Jersey, recommends cognitive behavioral therapy interventions for this specific type of health anxiety. Specifically, cognitive restructuring, in which you identify negative thoughts and work to replace them with more positive or neutral thoughts, may help you work through health concerns. The goal is not to wear rose-colored glasses but to see things more clearly and accurately, without the bias of a negative mental filter. The American Psychological Association offers a cognitive restructuring handout that walks you through the steps.

Berko adds that meditation (whether on your own, with an app or a guided video, or at a meditation center) can be beneficial for managing health anxiety.

Whether it’s doctors who aren’t listening to your concerns or dealing with insurance problems, living with a chronic illness like CIDP often means additional stress over navigating the healthcare system. Berko recommends seeking doctors you trust, even if it means having to make several appointments to find the right fit. These providers can help with more than symptom management — they can provide referrals, appeals to insurance, and other resources that make it easier to navigate a complex health system. Chronic illness internet groups can be a great place to find these doctors, says Berko.

Additionally, once you find the right provider, it’s important to advocate for yourself. “Don’t be afraid to ask questions and be an active participant in your care,” says Hill. “Don’t walk out of your medical provider’s office until you have a clear understanding of your treatment plan. Practicing assertive communication can help build self-assurance and rapport with your medical team.”

• Although CIDP is marked by physical symptoms like weakness, pain, and loss of mobility, managing these symptoms can have an impact on your mental health.
• Living with CIDP can cause feelings of isolation, a loss of independence, grieving over your former life, healthy anxiety, and stress over the healthcare system. Educating loved ones, joining a support group, engaging in creative hobbies, using assistive devices, and practicing cognitive behavioral therapy techniques are strategies that can help you cope.