5 Things I Need My Loved Ones to Know About My Life With Illness

Living with chronic illness is hard. Though perhaps living alongside someone with chronic illness is even harder. For the ones who knew me before chronic illness, it’s probably near impossible. So, there are some things I want you to know that, hopefully, will make it a little easier for all of us. The first thing to know? I was sure it would be easier for me to write all of this down once rather than explain it every time I need to. So here goes:

1. The days I seem fine are the days I most need you to remember I’m not.

Something hurts pretty much all of the time. Usually two or three of my symptoms are present at any given moment and I’m very used to that. Just because I’m not talking about it doesn’t mean I stopped feeling it. When I do mention it, it’s probably because it’s gotten way worse than the “normal” level of that symptom I’m used to feeling. On the days when I seem fine, it’s only because I haven’t said otherwise. I need you to watch me smiling through a conversation and look deep enough to notice the parts of my body I’m trying to ignore. I promise if you practice, you’ll get really good at noticing. I always tuck my hand under my hair to put a finger on my ear when the ringing gets loud and the stabbing pain comes back. I shuffle my feet under the table when I’m fighting vertigo. I stop making eye contact when my body forgets how to regulate temperature and a wave of heat hits my face. I start leaning on things and wiggling my fingers when, mid-conversation, my heart lets me know I’ve been standing too long. And I slouch and scroll through my phone mindlessly not to be rude or disconnected, but to distract myself in the moments when five or six or ten symptoms decide to come all at once. I am always feeling something, even if it’s not at all visible.

2. I don’t tell you everything I’m feeling because I don’t want to be a burden. But I do want to tell you.

If I let you know every time one of my symptoms was bothering me, we wouldn’t have time to talk about anything else. So I usually won’t say anything about what I’m feeling unless you ask. And a lot of the time, I want you to ask. If I start the conversation, I feel like I’m being a burden. If you start the conversation, you have already let me know I’m not.

3. I need you to try to understand what I feel, but also understand that you never fully will.

Believe me, I know it is impossible to understand how something feels if you’ve never felt it before. It’s also impossible to understand how something feels for someone else even if you have felt it before. But it is not impossible to be aware of and appreciate what it might feel like. Please don’t tell me you know how I feel, even if you truly believe you do. Ask me what you can do to better understand what I go through. Tell me you don’t know what to do or say, and you’ve just said the right thing. Slowly, I will help you understand, but I can’t if you already think you do.

4. I only need one thing from you, but it’s a big thing: empathy.

Sometimes I wish I could give you all of my symptoms for a day, because that would be the only way for you to be truly and deeply empathetic in the way I need you to be. But empathy can also be learned by listening to me, seeing me and living alongside me. Get online and read about dysautonomia or Ehlers-Danlos syndrome or mast cell activation disorder or Meniere’s disease and then tell me that you did, and you will automatically be on my list of the most empathetic friends and family I have. Be an observer and a good study. Remember what I’ve told you here, take note of all the little things each day that you might not have noticed before reading this, and then remember them. Become as good at catching onto my symptoms or bad days as I am at hiding them, and I promise I will notice and greatly appreciate your efforts.

Most of you will never reach a place where you can be truly empathetic toward me. And that’s OK. But the best way to try is to be aware of how the smallest things you say and do can either have an incredibly positive or unbelievably negative impact on me. Put an extra few seconds of thought into the things you say around me. Especially the things you might want to complain about around me. I want you to be honest and unashamed about expressing what you’re feeling with me. I don’t want you to feel like you have to walk on eggshells around me. But, be mindful.

Realize that though I too try to practice empathy, it is sometimes difficult for me to hear you complain, since one comment about how tired you are or how your back hurts may feel to me like you’ve forgotten about or minimized something I feel and keep quiet about every day. If, in the moment, you feel like you can manage without saying it, then don’t say it. Or, at least acknowledge my experiences too. I want to be able to relate and empathize, but I will shy away from bringing up my own struggles for fear of overshadowing you (see #2 above!). Help me make a mutually safe space for sharing without competing or comparing.

Empathy isn’t always about actions and the right words. More often than not, it’s about deliberate inaction and no need for words. It’s mostly about knowing what not to say and realizing that sometimes, the best thing you can do for me is to sit silently beside me in the moments when I’m hurting. I know you will never truly understand everything I feel. But you will hopefully always be learning. And the more you learn about how to be there for me, the more I will let you be there for me.

5. If you read this whole thing, you’re already much further along than most! Thank you for that. 

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