How to Support Someone with Autoimmune or Chronic Disease

Damiana Chiavolini, PhD

Supportive hands holding one another, representing compassion and emotional support for people living with autoimmune or chronic disease.

Many people want to support a parent, sibling, friend, partner, colleague, or neighbor living with an autoimmune or chronic disease but are often unsure how to help, what to say, or how to respond to their health needs. They may worry about saying the wrong thing, asking too many questions, becoming a burden, or respecting a loved one’s request for space.

An important aspect of this discussion is that caregivers often come from a place of authentic care and awareness, so what they truly need are strategies to approach and interact with a loved one or person they assist.

To explore this sensitive topic, we talked with two experts: Brenda Snow, author, patient advocate, and founder of Snow Companies living with multiple sclerosis (MS), and Sipora Weissman, licensed clinical social worker living with a chronic illness.

Why Can Supporting Someone with Autoimmune or Chronic Disease Be Challenging?

Supporting someone properly can be challenging because autoimmune and chronic diseases are diverse and invisible to others. People may not always talk about pain, fatigue, or other hidden symptoms they experience daily. They may also feel uncomfortable discussing changes that affect their mental wellbeing or openly sharing concerns about the future.

“This invisibility often creates misunderstanding. People may look healthy on the outside while struggling profoundly on the inside, leading others to underestimate their needs or question their experience,” says Snow.

“Discussing a diagnosis can also be difficult because individuals may fear stigma, being treated differently, or becoming defined by their illness rather than by who they are.”

The other challenge is supporting people as they manage their disease through phases and changes. “Treatment journeys are rarely straightforward. They can involve trial and error, side effects, periods of stability, and unexpected setbacks,” adds Snow.

Weissman mentions that many of her clients do not want to dwell on or explain their health struggles.

“Because many people with chronic illness want to be social, it can be a challenge navigating telling friends and family about the accommodations they need. This is often especially true for people in their 20s and 30s.”

Snow and Weissman state that useful support includes:

Listening actively

Believing a person about their symptoms and experiences

Recognizing that invisible symptoms are still very real

Being flexible and compassionate

Communicating honestly and openly

Refraining from giving unsolicited advice about supplements, diets, doctors, or treatments that will “fix them”

How Can I Respect Boundaries and Avoid Creating Pressure?

Respecting boundaries while maintaining meaningful connection is a crucial aspect of helping people living with autoimmune and chronic conditions. Snow highlights that being supportive also entails acknowledging that a person may be undergoing an identity crisis, so the perception and the reality of who they are sometimes shifts. “They may have gone from being a mother to being a ‘mother who is sick.’ That was my experience when I was diagnosed with MS while raising my young daughter.”

Snow adds that family and friends may at some point cross a boundary, especially early in the disease process, so it’s important for a person with a chronic disease to advocate for themselves.

“Saying ‘I know you mean well but that’s not helpful’ is a great way to safeguard your relationships,” says Snow.

The experts share additional pointers for offering concrete support:

Think about who your loved one was before their diagnosis and connect with them on that level. Consider that they may have limitations, so involve them in activities that will not lead to exertion.
Make the person feel needed and don’t start every interaction by asking how they feel. Tell them about an experience, send them a lighthearted reel, or lean into them for advice, so your relationship doesn’t feel one-sided.
Include a person in gatherings and events. An invitation alone can mean a lot, even if they may be unable to attend.
Be understanding if the person cancels plans. Symptoms can shift quickly, and many people will not know how they will feel until the last minute. If they are unable to attend, be mindful not to make them feel guilty.

What Do People with Autoimmune or Chronic Disease Find Most Helpful?

People living with autoimmune disease typically need

Flexibility from employers and caregivers
Practical assistance during flares
Access to knowledgeable healthcare teams
Connection with others who share similar experiences

They appreciate being supported by caregivers without judgment through a journey that may be difficult and unpredictable. Snow advises reading and learning about specific diseases.

“Patients value when people educate themselves about the disease rather than expecting the person living with it to constantly explain or justify their condition,” she says.

Weissman agrees about the importance of researching symptoms. “It could be helpful to do a little research on what your loved one is experiencing.”

Snow cautions caregivers about what may be unhelpful, including putting pressure to “push through” symptoms and making remarks that minimize or compare experiences. “Comments such as But you look great, Everyone gets tired, or Have you tried this supplement? may be well-intentioned but can make people feel dismissed or misunderstood.”

Knowing what not to say can be just as important as knowing how to offer support. Learn which common phrases may unintentionally minimize someone’s experience and explore more supportive alternatives.

What Not to Say to Someone with a Chronic Illness →

What Can I Say to Someone with Autoimmune or Chronic Disease?

What to say to someone with autoimmune or chronic disease greatly depends on the person and how they navigate their specific illness. Some want to openly talk about their illness, while others do not.

Both experts share tips that typically help, regardless of how a person is navigating a condition:

“I’m here to help you through this journey.” This approach allows someone to know you’re there for them.
“Are you okay with me asking about your health?” This shows that you’re open but also respectful of their boundaries.
“I’m bringing you dinner Tuesday and Friday. Do you prefer chicken, salmon, or vegetables?” Saying what you plan to do (and providing flexible options) allows them to accept your offer without feeling dependent or indebted.

How Can I Support Someone While Managing My Own Health Challenges?

Keeping a balance between supporting a loved one and taking care of oneself is crucial, according to the experts.

“Be open with your friends and family members about what you can realistically offer while managing your own health,” says Snow, who also points out that we should never assume that sharing our own health challenges is a burden to someone with a chronic illness. “Relationships are strengthened through mutual support and vulnerability,” she stresses.

“A simple text or a phone call can be very meaningful to a person with chronic illness who is having a hard day and can’t leave the house,” adds Weissman.

The Role of Community and Support for People with Autoimmune or Chronic Disease

A few words should be spent about the role that community, peers, and online support play in helping those living with chronic conditions. Reviews of multiple research studies revealed the potential of empowerment interventions such as self-managed education and health coaching, alongside digital technology to help people take greater control of their health and build meaningful relationships with others (1, 2, 3). However, more research is needed to draw clear conclusions.

As someone living with a chronic condition, Weissman suggests approaching online forums and support groups thoughtfully. “My recommendation is to find a group that doesn’t revolve around complaining but instead focuses on support, connection, and living life as fully as possible despite health challenges.”

About the Author

A freelance writer who specializes in medical and life science topics. As a trained researcher, she authored journal articles in the areas of infection and immunity and wrote booklets and book chapters about different diseases. As a professional communicator, she writes feature articles for magazines and other publications and develops content for higher education platforms. Damiana is also an experienced academic editor, microbiology educator, writing coach, and fragrance blogger. She is a contributing member of the American Medical Writers Association and a past-president of the association’s Southwest Chapter.

Damiana Chiavolini, PhD Freelance Writer for GAI