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!