One of the great things about the holidays is we are around our friends and families more often. But one of the downsides of that can be some of the conversations that we have. How’s school? Are you dating anyone? Why aren’t you dating anyone? We’re all familiar with them. But when you have a chronic illness, you’re asked some other questions that are … not awesome. I know that it comes from a place of love or wanting to know more about our lives, but that doesn’t change how frustrating or even hurtful these questions can be. Today I’m addressing these questions and explaining why we dislike them, as well as giving you some alternative questions to ask.
You’re still sick? When will you be better? Chronic illness means chronic. We can have times when we’re better and times when we’re worse. And a lot of illness (like arthritis) can be more severe than is commonly thought. I have an autoimmune disease does not have a cure; I could maybe one day be in remission (low disease activity), but even then I’ll still have RA.
Instead, ask: How are you feeling?
Do you really need to take so many medications? Yes, I do. Some people are convinced that patients take so many pills because Big Pharma has doctors in their pockets. Big Pharma makes my medications expensive because of capitalism, but I still need to take these medications. My medications are necessary in order for me to live an enjoyable life. And – I’m sure this might not be true for all conditions, but it is for me – there are no supplements that can do what my medications do.
Instead, ask: What does your treatment look like?
Have you tried [treatment]? This is usually split between suggesting actual treatments and suggesting what you think is a treatment. When it’s the first, I get less annoyed because for most conditions, all someone might know about a condition is from a commercial for a medication. Of course, the treatments that have commercials are only the tip of the iceberg; the only RA treatment I respond to does not have a commercial, and all the ones that have commercials don’t do anything for me. But you should really avoid giving medical advice because you know only a small bit of someone’s health, even if you do have a medical degree. Suggesting natural treatments (including something like yoga) can be really offensive because the message you’re sending is you don’t believe that the person with the condition is doing enough to feel better. The person who has the condition is more likely to be an expert on their body and their condition than you are.
Instead, ask: What treatments have worked?
What’s wrong with you? Hopefully I don’t need to explain how rude of a question this is. If you’re trying to figure out what someone’s condition or illness is, there are better ways to phrase this. But if you’re not sure if they’ve ever said anything explicitly, don’t ask. It is not a requirement of chronic illness that we share our medical histories, and some people aren’t comfortable with it. If you know that someone has shared the name for their condition before but you can’t remember it, then it might be okay to ask. But if you don’t think they have, then don’t.
Instead, ask: Remind me – what condition do you have? OR How does your condition affect your life?
Why can’t you help with [meal, cleaning, etc.]? When you have a chronic illness (for many of them), everything is more difficult than it is for the non-chronically ill. Everything takes more out of you and it takes longer to recover. Additionally, we have to budget our energy if we want to do things later in the day. And some days are better than others, so we might be up for something on Monday but aren’t up for the same thing on Tuesday. We have to take so much more into consideration when it comes to our daily lives.
Instead, ask: Are you feeling up for [less-strenuous assistance]?
Why are you still living at home? Don’t you want to move out? Yes, I would love to live independently again. But right now, I’m not at a place where I can do that, and it hurts when people remind me of that by asking why I still live at home. And there are several things that go into this: I need to be able to cook meals for myself and/or meal prep, I need to be able to clean or at least tidy up, and I need to be healthy enough to work full-time and/or financially support myself. Also, as a reminder to those of you who aren’t a millennial, most millennials have a significant amount of student loan debt, and more young adults than before are living at home because of that.
Instead, ask: What does your future look like?
What do you wish people didn’t ask you about your life with chronic illness?
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