Being alone is not the same as being lonely. Chronic illness necessitates long periods of alone time. I have never struggled with being alone. Blame it on my introversion, I guess. I don’t know. The point though: aloneness is not what brings the darkness.
Aloneness is a matter of proximity, of physical distance. People aren’t with you. But you remain connected to them. You feel their love and support.
Loneliness, though? That’s different.
Loneliness is not about physical distance. Loneliness is about disconnection from the people around you, from God’s creation, from God himself. Loneliness is a spiritual condition, a dark and dangerous one. Loneliness is a chasm erected between you and everyone else, an impassable barrier. And you’re the only one on the other side. Loneliness is what Jesus must have felt when from the cross, he cried, “My Father, why have you forsaken me?”
I experienced loneliness at different times during my journey with chronic illness. And for different reasons. Some were unavoidable, a by-product of months and months of unimaginable anguish that pushes – and then pushes more – until you’re forced into a dark place.
There were other times, however, where loneliness seemed preventable. These were times when I heard things that reminded me I was not like the rest of the world. Though I believe every one meant well, sometimes they made comments that reinforced the chasm.
That’s why I’m writing this post. I want to help people who have never endured a chronic illness. I want to help them understand that some statements are more than statements. Some statements create chasms, they erect barriers that drive a chronically ill person into isolation and loneliness.
Most of these statements – all of them, in fact – came from people outside my inner circle. Those in closest proximity to someone with a chronic illness find out quickly that words are hopeless as healers. Presence is most important. Presence, in fact, is the greatest antidote to loneliness, to my version of it, at least. I didn’t need a quick fix. I needed love.
Maybe you know someone with a chronic illness. Or maybe you overhead so-and-so has Lyme disease or Chronic Fatigue Syndrome or whatever.
Please don’t say these things.
My friend/dad/cousin had a chronic illness, have you tried…
The Whole 30 diet? Paleo? Gluten-free? Acupuncture? Supplements? NAET doctor? Homeopathic doctor? Detoxification? Doctor Cyborg in Lithuania? Moon crystal injections? Goat yoga?
When healthy people make a passing comment like this, you want to know what someone with a chronic illness hears?
He thinks I’m just not trying hard enough. He thinks if I had more willpower or inner strength or whatever, I would find healing. He thinks this is not a big deal, like “Meh, don’t worry about it, man. Just try the Paleo diet. It worked for my friend. It will work for you. Problem solved.” This dude has no idea what I’m going through. No idea.
I know what you are going through…
No, you don’t.
Look, I get it. You had that one weird medical thing a few years ago. You were in a lot of pain. It went on for a few weeks. You couldn’t work and your life was a wreck and so on and so forth.
I mean in the nicest possible way (but not so nice that you repeat it): I don’t care.
God wouldn’t give you more than you can handle.
First of all, faulty theology. Second of all, if God is behind all this, then I’m not sure I want to continue with God. Actually, I’m quite sure I don’t. This is sadistic, leading someone into a chronic illness. And for what? To learn? To grow? To accumulate a few wisdom nuggets that you can later share with others?
People grow through suffering. Suffering is life’s greatest teacher. But God’s not the orchestrator. God doesn’t cause suffering, nor does he push us into it.
Let me know if there is something I can do for you.
When you’re suffering, you’re overcome with all manner of stress. You can’t work. How will your family pay the bills? What will happen to my kids? Have I taken all my meds today? Will I ever find my health again? How will I get up to pee?
This statement adds one more rock to an already overloaded pile, a pile always on the verge of collapse.
A better option? Tell the person what you’re going to do. Be specific and concrete. I’m going to bring you dinner tonight. I’m in the area, can I stop by? Things like that are far more helpful. And always give the person with a chronic illness an out, in case he doesn’t feel like food or company.
I’m praying for you.
Many, many people prayed for me as I journeyed through this wilderness. And for every one, I am grateful. I mean that.
But every time someone said they were praying for me, I became more resentful and angry with God. God wasn’t healing me. It seemed, in fact, with every prayer, I got worse. What’s the deal? Is my faith too weak? Did God not care that I was in so much pain?
But, you might say, God did heal me. I am healthy again. True. But at certain stops in my journey, I met people of all types who would never find physical healing. At the Mayo Clinic, particularly, I crossed paths with several children with terminal cancer. What about them? They would most likely die.
Seeing these people changed me. If God is a healer, why all this senseless suffering?
Just like I don’t believe causes people suffering, I have come to believe God also doesn’t heal people. Or if he does, that’s not primarily how he interacts with suffering.
The power of prayer is the reminder that God is with us, that God became suffering, and can, therefore, empathize with ours. And I promise, in the midst of extreme suffering, we need God’s presence. I need it. More than his healing.
So, this statement – I am praying for you – is a comforting one. But only if the receiver of those words has a healthy image of God, an understanding that God doesn’t primarily heal people from physical or emotional pain. But that he primarily reveals his divine presence through it.
How is your relationship with God?
By every Christian metric possible, terrible. I rarely read the Bible (reading of any kind was a trigger). I rarely went to church (church buildings were another big trigger). I tried to pray but found myself unable to string coherent thoughts together (extreme brain fog was at the core of my condition). Was I in community with other believers? No (I struggled to get out of bed most days).
My relationship (if you want to call it that) with God wasn’t terrible, though.
I learned to find God in other ways. I looked for the divine in the details of life, the small things, in the stillness and silence. I would listen for God, and this became my form of prayer. I would sometimes, from my front window, watch my kids play and think about how grateful I am to have my sight and a house and a front yard and stuff like that. Trivial things, sure. But doing this became my form of spiritual practice, to find positives in an atmosphere of suffering and loss.
But when you explain this to a healthy, church-going person, it sounds ridiculous. How can you have a good relationship with God if you aren’t reading the Bible and going to church?
So the question – “How is your relationship with God?” – brought a fair amount of anxiety with it. And almost always, because I didn’t have the energy to defend my position, I would just say, “It’s fine.”
Everything happens for a reason.
This statement comes from the ego’s desire to have everything makes sense. It comes from a desire for control and a fear of uncertainty.
I don’t believe everything happens for a reason. Some things just happen, without explanation, because we live in a world where chaos and disorder are as central to its continued movement as oxygen is to ours.
Things will get better. I promise.
False hope is probably the most damaging thing you can give someone with a chronic illness. This statement is almost always that, false hope.
Please don’t say it.
I left some things out. Which statements did I miss? Leave a comment below.
Grace and peace, friends.