What the Chronically Ill Really Need from You

As a person with a chronic illness, daily life can be a lot to handle. One of the more difficult things, in all honesty, is well-meaning people. I know it’s hard for you to know what to say or do: really I do. To help us both out, here are a few examples from my life just this week.

Problematic response to finding out I’m ill #1: “I know just how you feel! I lifted something wrong and had a backache for almost two weeks! It was awful!” You had pain for two weeks, I’ve had pain for almost 30 years. That’s not the same thing, and no, you don’t know what it’s like. Comparing your temporary condition with my lifelong one isn’t helpful. You want to sympathize, and I appreciate that, but to equate a temporary, short term condition to a constant day-in, day-out, decade-after-decade condition only shows that you DON’T know what it’s like.

Problematic response #2: “Have you tried essential oils/chiropractics/canned nutrition/a different doctor/a voodoo witch doctor?” These are usually paired with anecdotes of someone you know or heard of that tried said solution and was miraculously healed. Once again, I appreciate your heart in this, but yes, I’ve tried it all (except the voodoo witch doctor), usually more than once. It didn’t help, or I’d still be doing it and I’d be well. I realize you have no way of knowing that, so I will have grace with you, but don’t continue to push. You can say it once, but then let it go. Please. Just let it go. If you don’t, I might have to start singing that song at you, and nobody wants that!

Problematic response #3: “Has your doctor done test X on you?” This is a generalized response which includes “Why hasn’t your doctor…” and “Why doesn’t your doctor…”, and “You should make your doctor…” and is the bane of my personal existence. I don’t know why my doctor hasn’t done those things, and no, I’m probably not going to argue with him about it next time I see him. I may ask him about it, but every time I’ve done this he is fully aware that such a test or procedure exists and has valid reasons why he hasn’t used them on me. Please remember my doctor has more experience with my disease than you and I together do, so he generally knows what he’s doing.

Problematic response #4: “You need to try praying X amount a day/X scriptures X times a day/ speaking to the disease in the name of Jesus and declaring it cast into hell/ repenting of hidden sins/ attend the meetings being held by Brother Miraculous in Iowa/ or getting the deacons to anoint you with oil.” This is really just another version of response #2, but in a way it’s more painful because at the root of it you’re telling me if I was more spiritual/holy I wouldn’t be sick. My illness is not my fault, and it’s not because I’m lacking in my relationship with God. We live in a fallen, decaying world, and sometimes illness happens.

So what do we really need from you, the healthy ones? We need compassion and understanding. What about saying “That must be really hard to deal with. I’m sorry to hear you’re going through that.” And STOP. We also need you to not assume we can or cannot participate in something you are going to be doing. If you are concerned we might not be up to it, ask anyway, thus allowing us the dignity of getting to control our own lives and schedules. If you assume we can, be prepared we may need to say we can’t and accept our decline with grace.

If we know you well, and you know about our journey and happen to hear something that might be new to us that might help it’s OK to tell us about it, but say it once, then stop. Most of us are open to new possibilities for relief, but most of what you hear about is not going to be new to us, because we try everything. I’m blessed to have a very patient specialist who takes all my questions respectfully because he deals with chronically ill people all the time, and he knows we search for any straw to grasp at.

Every single friend I have that is chronically ill has had the experience of being made to feel as though they are letting other people down by not getting well. People give advice, or the religious ones pray, then look to us expectantly hoping to see us jump up and yell hallelujah and run around the room. When it doesn’t happen they are crestfallen, and most of us feel bad about you guys feeling sad. Does that mean we don’t want prayers for healing? No, but we need you to keep your emotions about the outcome to yourself. That sounds harsh, but we really do need that. If you’re disappointed, how do you think we feel? Pray with hope and expectation, but with understanding that you’re not the first one to pray for us, and so far that hasn’t been the answer for us.

Personally I pray for the day that all that accumulated prayer bursts forth in glory and I will walk pain free and full of energy, a walking testimony to the goodness of God, but for now I limp through life, learning to lean on God in the midst of my pain. While it’s not what I would choose, God is using it to grow my faith and strength in my relationship with him. I have learned a lot about faith, God, living with priorities, and walking in mercy, and I’m at peace about my circumstances. If God has allowed this, I can survive this. And you can, too.

Following is a quote from Misty Edwards that really sums up how I live my life. If my illness makes you uncomfortable or sad, maybe it will help you, too.

Because life, life is but a vapor
But its brevity is what makes it a treasure
So feel it all like a love letter
To the One you’ll live with forever.

                       –Misty Edwards, “Little Bird”



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2 responses to “What the Chronically Ill Really Need from You

  1. Dianna

    Over the many years we’ve been friends, I imagine I have done most, if not all, of these at some time or other.
    Forgive me!
    Ignorance and caring can make a painful combination. I’m sorry.
    And I love you.

    • You’re fine! We know each other well enough that I understand where you’re coming from. Plus, you never push; you just let me know of something interesting that might be helpful. I appreciate that.

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