In a recent flare up of my chronic illness, I found myself struggling with answering the question, "what should I say?" or "what can I do to support you?" These questions just made me angry because it's just like if you tell someone to apologize to you, the apology then means nothing. This is no fault of the person asking the question. And in many ways, I understand where you are coming from. Our society doesn't train us to talk about illness as a long term thing that has no foreseeable end. We aren't taught how to care for people with chronic illness. So I thought I'd write a list of things you should say if someone comes to you struggling with a chronic illness. This also serves as a sort of manifesto of things I would say to my fellow spoonies/chronic illness warriors as well.
DISCLAIMER: This is just my opinion; I'm sure that you may disagree with some of the things I say here; if you do, please feel free to leave your thoughts in the comments.
1. I'm not going to sit here and pretend to understand what you are feeling or going through.
Why: Unless you actually understand, this is a necessary first thing to say because most likely, you don't understand, and that's okay. My experience, and I'm sure that other chronic illness warriors would agree with me, is that each person's journey is very unique and while you may understand aspects of what I'm going through, you probably don't fully understand. We aren't always looking for understanding. Sometimes we are just looking for comfort or for someone to validate our feelings and make us feel heard.
2. I will not tell you that everything's going to be okay because I do not know that; I am not your doctor.
Why: Our instinct while comforting is often to say, "It'll be okay," but the struggle with this when speaking to someone who is battling chronic illness is that that's not necessarily true, so it can feel invalidating of our experiences if you say it. Instead, acknowledge it, as scary as that might be for you as well.
3. I know that you feel alone, but just know, that while you may feel alone, there are people out there, including me, who love and care about you and benefit from having you in their lives.
Why: Chronic illness is isolating; there's no way around it, so reassurance is especially helpful. One caveat with this one is that you have to say it even if the person is not believing you because often, when we are stuck in pain or alone for so many hours of the day, one person saying this to us is not actually going to fully remedy the loneliness, although it can do something to help.
4. I know that on some days you want to give up, and that's okay. Chronic illness is hard and taxing, but on those days, you can call me, and I will sit with you in the pain and not tell you to have a positive attitude.
Why: I am so sick and tired of people telling me to "think positive." I get it, that's what we are trained to say. Choose happiness and all of those other pinteresty kinds of quotes, but there are going to be some days when we want you to just be supportive instead of trying to impart advice upon us. Something John Green said he was told sticks out to me, "don't just do something, stand there." And this is super important. Being there and sitting through the bad days is the absolute best thing that you can do.
5. I see that you're scared, and while I can't take away the fear, I can tell you that you will never be alone in facing the darkness,
Why: Uncertainty, no matter how hard you try to embrace it, is scary and while it is a very necessary part of life, the worst part about it is facing it alone. We may not be able to shine a flashlight into the darkness of the future, but we can certainly hold hands while we step into that darkness.
6. Be kind to yourself. Your body is already fighting. You do not need to fight it.
Often, when we are caught up in pain or illness, we end up forgetting to do the things that we actually enjoy. We only give ourselves what is absolutely necessary to survive, and that is not enough to live on. Reminding us to take care of ourselves in a way that may not be explicitly physical can be really helpful. The other positive thing about this one is that when our bodies are not doing what they are supposed to, we are often angry with them which is valid, but it's not always productive.
7. You are doing well.
I know that this one might be a little controversial, but it really helped me recently. When in the middle of a chronic illness flare, it can feel like we are doing everything right, but our bodies are still suffering in some way. Validation of our efforts can be really helpful.
As always, your input is always appreciated. I try to use these strategies in my own work and I hope that they will be helpful to you as well.
Note: This blog post was originally published on 6/2/17, but it has been edited on 5/9/18
