Please note that this is an Archived article and may contain content that is out of date. The use of she/her/hers pronouns in some articles is not intended to be exclusionary. Eating disorders can affect people of all genders, ages, races, religions, ethnicities, sexual orientations, body shapes, and weights.
By Center for Change
Illness splaining is a thing. I thought I made it up a few weeks ago when a family member with zero experience or expertise started trying to “educate” me about my chronic illness/autoimmune disease. As she was droning on and on about a condition that I live with daily, I literally floated up outside my body and watched from the ceiling. Ok well not literally but that’s what it felt like. As I observed the situation and remained admirably calm, I thought “Is she is explaining my own illness to me….this is illness splaining”. However, I have since discovered that this term is all over the internet. I don’t know who first coined it but I can bet it was someone who was going through exactly the same scenario as I.
I’m not assuming bad intentions. I am sure that this family member was well meaning and thought she was really dropping some knowledge. I understand the desire to want to help if someone is suffering or struggling and I also get that it can be frustrating if you feel like the person you are trying to help is not doing everything they can. The reality is that you don’t know what you don’t know. If you don’t have a chronic condition or chronic pain or illness, then don’t assume that you know the entire story. You may not know everything they have tried or what they have gone through. Minimizing symptoms while telling a story about someone else who was so much worse is not the way to help just FYI.
Here’s what I am NOT talking about. Let’s say I have a bad cold or strep throat or a torn rotator cuff or even Covid. You have had a bad cold or strep or torn something or had Covid or maybe you took care of a family member who did. Better yet, are you a medical professional who treats one of these conditions? Then YES!!! By all means, tell me what you did, tell me what helped, tell me your remedies. Help me. I absolutely want to know what worked for you. If you survived breast cancer and I have a lump….please please please tell me everything. If I have appendicitis and you had your appendix out a few years ago, please explain it in detail. Even if I am experiencing anxiety or depression and this is something you have gone through, I want to know what worked for you.
I am a curious person who likes discussion and debate. I like to read and research and I am sure that I have tried to dazzle someone with my knowledge about a subject that I am not qualified to give advice about. I now try to be more cognizant when I am talking to someone who is suffering. I try to be more sensitive because I know what this feels like when someone on the “outside” tries to play insider. Those of us who struggle with chronic illness…mental or physical or both….don’t need illness splaining. We just need support and understanding that there are huge differences between people. Especially when it comes autoimmune disease or mental illness. Meds might work for one person and not another. My symptoms might be triggered by something one day and not the next. It’s not always black and white and it’s not that we don’t believe there might be new information out there or that we have nothing more to learn. In most cases, we just probably don’t need you in that role.
If there is a person in your life with chronic illness…physical or otherwise….I know you want to help. Maybe ask them what is helpful? Don’t assume it’s information. Don’t assume it’s advice. Don’t assume it’s a story about someone else. Don’t assume you know how they feel. Recently someone asked me how they could help and I was so relieved I was tearful. As a person with dietary restrictions due to my illness, I get so tired of always having to be diligent and making the plans myself. This person took it upon themselves to make things safe for me, and asking me how to do that felt like such a gift. I felt seen and validated, and I had a renewed sense of hope.
People want to feel useful and helpful especially in the case of friends and family who might be struggling. I get it. People with chronic illness often don’t have the energy to know what they need or ask for help. Here are some practical ways you can support:
· LISTEN. Sometimes it helps just to have someone to hear you and not feel isolated. Just be careful to not be critical or offer advice unless you are asked.
· BE MINDFUL about invitations to social events. People with chronic conditions can have restrictions around food or crowds or sounds or lights or travel etc…. even concern about sickness due to repressed immune systems. And I am not saying don’t invite them but understand if it’s too stressful for them to make it OR better yet….make some accommodations that would make things easier for them so they can attend.
· REACH OUT. ASK. This is the most important thing. Don’t assume. Sometimes it’s enough just to have someone ask about how I am doing.