5 Things to Say to Someone With Autoimmune Disease

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If you’ve been diagnosed or suspect you may have an autoimmune disease, you’ve likely suffered from your friends and family’s lack of understanding around the disease. #autoimmuneproblems, right?! Without meaning to, loved ones can add emotional stress to the physical symptoms of the disease, making it feel like you have to soldier on alone.

The assumption that you’re on a fad diet, that you’re making a fuss because you want attention, or that your disease simply isn’t a big deal — all of these are too familiar for folks with celiac, Hashimoto’s, Crohn’s, lupus, ulcerative colitis, rheumatoid arthritis, Type 1 diabetes, and any of the 80+ other autoimmune diseases.

This post is for the friends, family, and co-workers of those who suffer from autoimmune disease — the important support network in our health journey. Below you’ll find some things you can say that show you’re an understanding, caring ally when it comes to autoimmune disease.

  • “Tell me more.” Brush off your good listening skills, because autoimmune disease is a challenge that most of us haven’t had to understand directly. Taking an approach of inquiry — and then stepping back and letting your friend or family member share — is the best approach. “How are you feeling?” and “How was today for you?” and “How has your energy/appetite/sleep been lately?” are good places to start. If you find yourself talking more than listening, acknowledge it and work to improve.
  • “I believe you.” Validating the experience of someone with autoimmune disease is one of the biggest gifts you can give. Because so many of the symptoms are hard to see from the outside, people are truly dealing with an internal struggle and are often made to feel like they have to “prove” their illness. Do your best to close the gap in your understanding of their disease, rather than approaching the situation with skepticism. Saying, “take care of yourself” — even if it means an employee taking a day off work, a partner going to bed early, or a friend trying seemingly-outlandish treatments — is one of the most powerful ways you can show understanding for their unique situation.
  • “I support you.” Autoimmune disease can be isolating, since patients are often left feeling too fatigued for many social gatherings, not to mention being unable to enjoy the same foods and drinks as their friends. I have many clients who say their social circles have become much smaller because the options for spending time with friends simply grew too few and far between. Continue welcoming them to social situations, and find ways to accommodate their dietary restrictions without making them feel high maintenance. Think of it this way: when you provide autoimmune-friendly options, you are allowing folks to use food to heal them in the way that works best for them—and with practice, it won’t feel like extra work at all.
  • “How can I help?” We want our loved ones to feel better, so it’s tempting to make all kinds of suggestions for solutions. When you hear yourself starting a sentence with “My friend who…” or “The other day I read…” try to pause and trust that your loved one is doing everything they can to find solutions that will work for them. Furthermore, autoimmune disease does not present uniformly across all patients—the symptoms you heard about from your other friend or read about online might not apply at all to the person in front of you. The only solution they may need from you that day is your empathy.
  • “I care about you and I’m here with you for the long haul.” Autoimmune disease can be an emotional roller coaster with good days and bad days. Many patients report feeling helpless and at the mercy of their disease, particularly before they find the correct diagnosis. Sometimes this leads to unhealthy coping tactics, depression, and self-inflicted isolation. If you notice a considerable downturn in a friend, family member, or co-worker’s morale due to autoimmune disease, let them know that you care about them and are there for them. Odds are they already know they need support, but haven’t yet found the right mix of strategies for managing their disease. Fortunately, the science in this area is advancing rapidly, so in ten to twenty years we will know even more about living a full life with autoimmune disease. As folks in the Autoimmune Paleo community know, It does not have to be the damning diagnosis that it used to be!

How have you successfully sparked conversation with your loved ones, friends, or co-workers around autoimmune disease? Share in the comments!

About Sarah Kolman

Sarah Kolman RN, MA, CHPN is a Registered Nurse, Integrative Nutrition Health Coach, Contemplative Psychotherapist, wife, and mom of three boys. Sarah offers unique one-on-one health coaching that blends her nursing and psychotherapy experience with holistic and nutrition-based health concepts. Learn more about Sarah’s coaching services by visiting her website, www.this-one-life.com. Her book Full Plate: Nourishing Your Family’s Whole Health in a Busy World is available on Amazon and her website. You can follow Sarah on Facebook, Instagram, or Twitter.

12 comments

  • Athena Roxas says

    My husband doesn’t understand me at all. He makes me feel very nervous when he is around me. He makes me feel so sick in the guts. He really stresses me out..

    • TheresaS says

      If I am understanding you correctly, then get help from a friend or counselor. That level of inflicted anxiety is abuse..and you need to get help from someone you trust sending warm wishes.

  • Nan says

    I love and support 100 percent. This is a difficult disease. Every day that goes by I pray for better health. The feeling of helplessness is overwhelming. You can only feel the pain that someone you love is hurting so much

  • Marjorie says

    I have celiac disease and to tell my friend and family including my partner when I don’t feel well today. They say things to me like get over it everyone doesn’t feel well but you have to push yourself to get through the day!☹️#imalone

  • Thank you for sharing Nan. The feeling of helplessness IS overwhelming! I hope that you have a strong support system to carry you through.

  • Dee Baldini says

    I have a very rare autoimmune disease. It is so hard to even find a doctor who knows anything about it. Most never even heard of it. Oral Linear IgA. I read your story & it is so true. I lost 35 pounds because it is so painful to eat so everyone tells me how great I look. Even when I feel terrible. When you have a autoimmune disease you do feel like nobody understands what you a going thru. I enjoyed the story

  • Doctors don’t really believe me either when I tell them all my strange symptoms. They can’t say for sure whether I have ADHD, depression, or some weird mental illness. You can’t really diagnose autoimmune disease with blood test I think, because there is a spectrum. Today I just have fried chicken nugget, and I don’t feel well. But I rarely feel perfect so I don’t know for sure. But I do know my sleep apnea disappeared after I cut out sugar and gluten. If the government didn’t give me money for “disability” (lucky me), my family would still be mocking me. They don’t really believe I have a real problem.

  • Kermich says

    When my doctor finally rolled up her sleeves & started really linking everything together was in October 2016. That’s when I discovered I had Hashimoto’s. She told me I was doing almost everything I needed to but, I’d have to go on another elimination diet to find the cause. I’m only now discovering there is much more to this. I’m finding out who will stick by me & help me out & who goes running for cover. Ugh! Glad I found this site! Thank you

    • Angie Alt says

      Kermich, we understand. The beginning of an autoimmune journey can be tough on our support networks. Keep up your efforts! As you start to feel better, the networks around you will strengthen too (including the people on your healthcare team).

  • SadCousin says

    My dear cousin has been dealing with pain and other “mysterious” & seemingly unrelated health problems blend for a couple years now. Test after test with no results at all, even her own doctors literally started brushing off her physical ailments as “normal” or just due to stress. Knowing there are so many hard-to-diagnose auto-immune diseases out there, how is this even acceptable in the medical field?! How are doctors like this still in practice???!

  • SadCousin says

    I should have added this to my post, I have an additional question: once it was determined that she has an autoimmune disease, she was prescribed a medication “to help”…. but they haven’t determined yet which autoimmune disease she has. Is this normal? To be prescribed medication before it’s known which disease you are supposed to be treating?

    • Mickey Trescott says

      Hi Cousin,
      I totally understand your frustration, and this is why we are here trying to educate and empower folks – our medical system is clearly broken and we need to advocate for ourselves to get good care. Yes, there are some diseases that are hard to diagnose, and sometimes doctors will see if a medication works in order to even hone in on what disease the patient has. I’m sorry for your cousin, and I hope she is able to find some answers soon!

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