An autoimmune disease diagnosis brings many mixed emotions, relational tensions, and financial stresses. Actively engaging in communication with those closest to us is vital in fostering community, rather than division. Autoimmune diseases are often invisible illnesses that can lead to feelings of isolation. It is key to explain, inform, and share the road we are walking with those around us or it will be hard for them to understand what we are facing and can cause distance in the relationship.
According to the American Academy of Allergy, Asthma, & Immunology, “an autoimmune disease is an illness that causes the immune system to produce antibodies that attack normal body tissues. Autoimmune is when your body attacks itself. It sees a part of your body or a process as a disease and tries to combat it.” We know the definition of autoimmune disease very well, but others around us may not understand the core concept that the body is attacking itself. The first step is to help explain what an autoimmune disease is and why it is important to calm our body down. Without defining autoimmune disease, different diets and lifestyle changes can be perceived as extreme and unnecessary. It also can be difficult for others to understand that autoimmune diseases do not go away, can only be managed, and have ramifications for the future.
Provide resources for those closest to you through books, websites, or podcasts that you have found helpful in describing autoimmune disease and more specifically the one(s) you have been diagnosed with. Invite those around you into your learning experience as its normal for the one with the autoimmune disease to spend many hours researching. In my case, the more I share the more they ask questions and want to learn, too.
Whether it’s a family unit or close friend, strive to work together by going together to appointments if possible. When family members and friends can ask direct questions to the doctor and see test results alongside the one with the autoimmune disease it can help them understand their loved one at a deeper level. Discussions about family routine, diet, and which restaurants to go to can be done as a family and can encourage healing. Communicating about these decisions upfront and making a joint decision can help everyone to have similar expectations. I tend to downplay symptoms to not come across as complaining, but it’s important to share with those closest to us what is actually going on, how we feel, and when we are in a flare. I’ve come to understand close friends and family genuinely want to know and want to help the best they can.
4. Give Grace
Close friends and family members also experience emotions similar to the person diagnosed with an autoimmune disease. These can range from, but are not limited to, anxiety, depression, sadness, frustration, and anger. It’s important to ask those around us how they are handling the different life changes due to the disease(s). A mother may have a sense of guilt when a daughter is diagnosed or a child may have trouble realizing gluten can never be in the house again if a family member is diagnosed with celiac.
Although we are not bound by our autoimmune disease it does affect the ways we act and react. For example, I often came across distant when it came to restaurants and other social situations. I wasn’t meaning to be a kill-joy, although it seemed that way. It went a long way to explain the anxiety involved with potentially getting sick, especially while in a flare. There are countless situations like this where if communication happens our actions make much more sense and understanding will happen naturally. We as a family have walked through these transitions over the past few months. I hope it can encourage you to be vulnerable, to communicate well in the community you find yourself, and help enable your relationships to flourish.