This blog documents the milestones in my thinking, feeling, and healing through depression, chronic illness, and religious deconstruction. The views expressed herein do not necessarily reflect my current convictions, but have proven critical in my personal evolution, and thus remain available for consideration.
There are endless lists available of What Not To Say to the chronically ill. Frustrated patients are posting them all the time. Please browse them and see if it might be helpful to change your tune when you socialize. I've tried to avoid fixating on the social irritations of Lyme, first because there are so so so many and it makes me cranky, second because we have all done and said insensitive things to people, and we will all continue to make mistakes as long as we’re dealing with people who are different from ourselves, in situations different from our own. I encourage us all to be aware and be better, not just with chronically ill communities, but for people of all races, ethnicities, genders, identities, orientations, occupations, experiences, etc. There's so much peace in dropping the judgment and listening to their stories. Turns out we have a lot of trauma in common. However, there’s one phrase that cuts me so deeply on a visceral, emotional, and spiritual level, that I want to address it.
“God is going to heal you.”
"God is going to heal you," and similar statements like "God is going to give _____ to you," and "God will do it for you." Friend, if you have been given the gift of prophecy and hear the voice of God, don’t let me stop you from doing His will. But I must say that I have never heard these words from a spiritually mature person who proceeded to counsel me in the ways of the Almighty.
Though well-intentioned, this phrase is often insensitive, naive, and shows a great lack of spiritual growth. I’m sure you can find entire books and sermons that will explain it better than I, but to make it brief: God’s thoughts are higher than ours. He works in mysterious ways. He is always good, but His goodness can hurt like hell. Our souls are refined much like iron (or clay) – by being thrown into a burning furnace then smote with deathly blows from a hammer. And very often this life is unspeakably tragic. You cannot know the mind of God.
If you want to speak truth, you’d have to say, “You will suffer in one way or another for the rest of your life until we get to heaven.” Not so comforting, is it? Actually, many people do say this, citing verses about "light momentary afflictions" and eternal reward. It's not comforting! Actually, it can increase suicidal ideation - bring on the heaven! Do not offer such hefty words in the name of God unless you are prepared to listen to a person's grief and suffering, face hard questions you can't answer, and spiritually disciple the person you are saying them to. Otherwise you risk breaking Commandment #3, taking God's name in vain, and destroying the delicate faith of a chronically ill person.
People used to tell Joni Eareckson Tada, a woman who was left quadriplegic after a diving accident as a teenager, that it was God’s will to heal her if she had enough faith. She did, He didn’t. In fact, He gave her stage 3 breast cancer and chronic pain.
You might take issue with me saying, “God gave her breast cancer.” You’ll say “God doesn’t cause cancer, He only allows it.” I dare to say that God does give cancer. The Bible says, “Every good and perfect gift is from above.” What better and more perfect gift is there than showing you the truth of His grace, being taken off the wearisome treadmill of modern life, and being called to lean solely on Him and His out-of-this-world love and provision? Joni says, “Nothing could be more heavenly than finding Jesus in the middle of your hell.” She expresses sincere gratitude to God for not healing her. It cleanses sin, it refocuses our worldly gaze, it gives us a higher purpose in this mortal life.
“Since therefore Christ suffered in the flesh, arm yourselves with the same way of thinking, for whoever has suffered in the flesh has ceased from sin, so as to live for the rest of the time in the flesh no longer for human passions but for the will of God.”
Notice I am not taking issue with the belief that God has a purpose for pain, that suffering can lead to greater joy, or that all things work together for good - I actually still believe those things. I am eternally grateful for the gift of Lyme Disease, which turned my life around beyond my wildest dreams. However, those are conclusions I had to arrive at for myself - they were questions that I had to answer, not answers someone else could throw at me. This feeling came by going through the suffering and finding my own path to understanding it, and ultimately healing from it on my own terms. It was no comfort at all for someone else to tell me those things. In fact, I only started healing when I left the religion that tried to "counsel" me on my reasons for suffering!
Be aware that many theological platitudes are of no comfort at all to many people. I do not have a problem with spiritual mentors teaching the process of growth, if initiated by the student. I have a problem with people who learned how to be human in seminary or graduate school trying to textbook-counsel humans who are suffering in the school of harsh reality. I have a problem with people declaring things will happen instead of empowering people to take charge of their lives by exploring how things can happen.
Also be careful with: “I’m praying for a quick recovery.”
By all means, intercede on our behalf. However, for the same reasons listed above, prayer for immediate healing is not always the most comforting. This phrase actually becomes more and more hurtful the longer our disease continues.
First, such a nonchalant comment suggests that you don’t understand what we’re facing. Lyme-MSIDS has no cure. We call resolution of symptoms remission, not a cure, because they very often come back years later. Maintaining health is a constant undertaking. For the rest of our lives, we must proceed with caution. The window for "fast healing” closed a long time ago on people with chronic illness. We don't just "get better." Second – and this goes for both phrases – it can bestow shame upon the sick as it weakens the faith of all. If you are praying, and don't see God answering, you're either going to start questioning your relationship with God, or you're going to start blaming the patient for not having enough faith, for not seeing God's signs, for not listening to “real” doctors’ advice, for not treating the right way, for taking too many pills, for not taking enough pills, for not seeing a therapist, for many horrible reasons we have actually heard come out of Christians’ mouths. If you're not ready to take a hard look at yourself and have your worldview shaken, don't direct spiritual advice (or any advice) at others.
What to say instead
These are general suggestions. Each and every individual is in a different place of their illness, of their healing, of their faith journey. Not everyone is going to appreciate the following words; you must be sensitive - apologize if you are told you crossed a line. The best thing you can do is get to know them, and find out from their own lips what they need to hear.
To a person of faith:
“I will pray God teaches you great things through this battle.”
“I will pray for His sustaining grace to hold you up every day.” “I am praying for His new mercies every morning.”
"I will pray for your strength and courage to persevere."
To a non-religious person: “I’m sorry, I can’t imagine what this feels like.” “Tell me about your journey.” “What do people misunderstand most about your illness?”
"Do you have a social media or blog page I can visit to stay informed?" If you’ve been there: "Yes, I went through that. It was really hard." "I thought it would never end. What helped me get through it was ______." "Are you searching for options, or have any questions?"
"I really empathize, but I find it too triggering for me to talk about."
If you haven’t been there: "Oh, I'm so sorry you're experiencing this struggle." Read the articles we post. Read the books we recommend. Watch the videos we share. Show us you’ve at least tried to understand this.
Or just stop trying to be nice if you really don't have the capacity to care - you're making it awkward for all of us.
Like I said, I myself am guilty of using the wrong filter (or none at all) when confronted with a health crisis I don't understand in an attempt to make myself feel better. I think a lot of it actually comes with PTSD and trying to save people from the suffering I've had to endure. It's also simply the nature of our society to try to help and fix things; we know very little of healthy grief and how to suffer "well." Let us be tenderhearted and forgiving.
Miserable comforters, be silent!