What not to say to people with chronic health problems! (Part One)
I know the world can feel hard to navigate these days without offending one person or another so I don't want to add to the list of people you need to take into consideration but I think when you love and care for someone going through a health crisis, you want to be there for them in the best way possible. Not everyone knows what to say or do in these situations so I thought I would share what I have experienced on the receiving end and you can at least see the inner workings of my mind. I think there are already quite a few lists out there on the topic but I am going to do this one slightly different. This will be a weekly series of two things not to say and what you could say instead because I know people want to be supportive and once I tell you all the things you probably shouldn't say, you are going to wonder what the heck you CAN say!
"Well, you look great!" I hear this all the time and I do honestly try to take it as a compliment so it doesn't get under my skin but it requires effort. This comment generally comes after I have opened up to someone about what I am going through with my health and it feels like they are disregarding everything I just said by telling me that I don't look sick like that is a huge bonus. When someone tells us we don’t look sick, it sounds a whole lot like they doubt we truly are sick. This feels invalidating for people with chronic illnesses, especially since it can take so long to receive a diagnosis it can make us wonder if it really is all in our heads. Many people are lost in the medical system searching for answers for years before they have a diagnosis and constantly feel like the medical profession is disregarding them. The term “invisible illness” exists for a reason. Many people with serious illnesses look fine on the surface and appear relatively healthy on any given day. However, it doesn’t mean that the pain and struggle isn’t real.
So, what could you say instead? Seeing as this comment usually comes directly after they have been vulnerable and opened up to you about what is going on in their life, I think a better response may be "I would like to learn more." or a simple "I'm here for you, is there anything that you need?" I have only recently realized how many people feel isolated and alone with their illness because healthy people just don't understand how to relate with "sick people". Often when you have a chronic illness, people come out of the woodwork with unsolicited advice on how to manage your condition. This is not the place to start and you will understand more on that with my next tip on what not to say. The best place to begin is generally a simple Google search. Ten to twenty minutes of research can go a long way in understanding your loved one’s condition and symptoms. Understanding the Spoon Theory will also give you a pretty good idea of how they live their lives. Asking them questions about their condition and treatment can also give you a lot of information. Your loved one is probably so informed about their condition that they can give a lecture at a medical school, especially if they have a rare condition. I have a friend that always looks into the best juicing recipes and essential oils for my health issues and that is the sweetest gesture in the world to me. I know they actually took the time to research what my condition is, are looking at alternative remedies that align with my lifestyle, and are saving me the time and energy of researching it myself.
"You should try..." This one I take with a grain of salt because I tend to do the same thing but it is my specialty so I think it has to come from the right place. Don't make a suggestion merely because your Aunt Susie had a totally different health problem and the keto diet worked for her. The only time I am going to listen to the words that follow "you should try.." is if somebody actually knows the exact benefits of their suggestion on my issue or if they take the time to send me a research article about it. I know people just want to help and mean well but the insane amount of suggestions I have received most often indicate how little someone knows me. I know I may be different here because I am extremely proactive when it comes to my health. I hate feeling terrible and will do anything and everything to feel my best so I have researched and googled days away looking for alternative remedies, natural solutions, and nutritional benefits to help assist the traditional medical regimen. But I do think most people with chronic health issues are the same way, nobody likes to feel like poo so they have probably tried a variety of things already.
I think the best alternative may simply be asking more questions before offering any unsolicited advice. You could ask "Have you tried or found any alternative remedies that have helped you?" That would at least inform you of what they have tried before you offer the same thing. If you are well versed on a subject matter than I think you have a free pass to suggest something helpful here but if this is not your specialty and you really don't have a grasp of their condition and treatment - do the research first before making a suggestion. I can honestly say I would find it highly impressive and be extremely grateful if someone said "You know I have never heard of that but give me a couple days to look into it and maybe we could brainstorm some ideas on things that could help." All it really takes is true listening and a little support or a small thoughtful gesture.
That's all I have for today but this will be an ongoing miniseries of blog posts so if you have any thoughts or suggestions on what not to say versus what to say, I would love to hear it!! Leave a comment or send me a message <3
Illness Etiquette Miniseries: