Autoimmune illness and your mind (lupus, MS, rheumatoid arthritis and more)

Examples include

• Alopecia areata
• Multiple sclerosis (MS)
• Psoriasis
• Rheumatoid arthritis
• Scleroderma
• Sjogren’s disease
• Systemic lupus erythematosus (lupus)
• Vitiligo

Many autoimmune symptoms, like fatigue and dizziness, can’t be seen. People may look well while working hard to get through the day.

Living with several long-term conditions can mean more appointments, more symptoms to track and more to explain.

Being dismissed can lead to self-doubt, shame and losing trust in health care. A large review found symptom dismissal was linked with depression and health care anxiety, including in people with lupus.

Some people feel relief when they finally get a diagnosis: proof it was real. The same moment can bring grief and fear about the future.

Learning your flare triggers and keeping regular appointments are part of living well with an autoimmune disease. A simple log of symptoms, mood and stress can help.

Depression with a chronic illness can come from the stress of the illness, from changes in the brain caused by some conditions, and from personal or family history.

In MS, depression has been linked with changes in brain structure.

In MS and other neurological conditions, depression is often overlooked and undertreated.

You could say

• “My mood has been low for weeks. Can we talk about that too?”
• “I’m worried all the time about my next flare.”
• “Could you refer me to someone for my mental health?”

Depression is treatable, even with a chronic illness. In MS, studies of talking therapy (CBT) and mindfulness programs have shown benefits.

Systemic lupus erythematosus (lupus) is a long-term autoimmune disease that can affect many parts of the body. It has many possible symptoms, which makes it hard to diagnose. Symptoms range from mild to life-threatening.

In a review of 59 studies, about 24% of people with lupus had major depression and 37% had anxiety, though results varied widely.

Up to half of people with MS may have significant depression at some point in their lives. It is often overlooked, but it can be treated.

The National MS Society’s MS Navigators help people with MS and their families find resources. Call 1-800-344-4867 or visit nationalmssociety.org.

A review of 72 studies found major depression in about 17% of people with rheumatoid arthritis. The authors concluded that spotting and caring for depression should be part of RA care.

In alopecia areata, the immune system attacks hair follicles and causes hair loss. In vitiligo, cells that give skin its color are destroyed, leaving lighter patches. Psoriasis is also autoimmune.

Because these conditions show, people may face stares, questions or comments. This can affect confidence, dating and social life.

There are more than 80 autoimmune diseases, including Sjogren’s disease and scleroderma. Whatever your condition, the feelings in this guide may still fit.

Even in remission, some people worry constantly about when symptoms will return. That worry is understandable.

What can help

• Having a flare plan ready
• Enjoying good days without “paying for them” in worry
• Noticing worry and gently bringing attention back to now
• Talking it through with a therapist

Relaxation techniques, support groups and counseling may help manage stress. Gentle exercise and some forms of yoga or tai chi may also help.

Saying “maybe” instead of “yes”, booking refundable tickets, or having a backup person for childcare can make life feel less fragile.

You decide when to tell a new partner. Some people share early to see how the other person responds. Others wait until trust is built.

You could say

• “I have an autoimmune condition. Most days I’m fine, but sometimes I have flares and need to rest.”
• “I’d like you to know, because you matter to me.”

Many people with autoimmune conditions have questions about pregnancy, parenting and passing conditions on. These are good questions to bring to your clinical provider early.

Conditions that come and go can still count as a disability under U.S. law when they substantially limit daily life during flares. The Job Accommodation Network (askjan.org, (800) 526-7234) gives free advice on workplace accommodations.

Illness can change how you look, what you can do and how people treat you. It doesn’t change your values, your humor or the people you love.

Most people need at least 7 to 9 hours of sleep a day to feel well rested.

Regular physical activity can help, but avoid overdoing it. Gentle exercise and some forms of yoga or tai chi may help.

Balanced meals with plenty of fruits, vegetables and lean protein are part of living well with an autoimmune disease.

Support groups and counseling may help with stress and with the feelings that come with a long-term illness.

Try

• “I believe you, even when you look well.”
• “Want to keep our plan, change it or move it?”
• “What would help most this week?”
• Learning a little about their condition

Avoid

• “Have you tried this diet?”
• “You don’t look sick.”
• “You were fine yesterday.”
• Commenting on visible skin or hair changes

Being doubted by family and partners is linked with more distress for people with long-term physical symptoms.

Ideas

• Cook a meal or send a food delivery
• Drive them to appointments
• Help with childcare or pets
• Sit with them quietly