It’s so true that a comment like that can be well intentioned but it’s just othering that is dressed up in a different costume. This is something happening to YOU and not to ME. This is what YOU need to do to make it “right”. That framing works until something inevitably happens to ME and then it’s just US, which it only ever is and was the whole time, which is why genuine love and compassion and connection is always the bridge. It’s our common humanity. This could just as easily be happening to me. I see me in you. I see you in me. The othering inevitably feeds the shame. I’m just glad that instead of swallowing the comment that you came to digest here where we have one big digestive system that can much more efficiently and effectively convert it into fertilizer for your garden ❤️
Thanks, David. I always love your insights. The othering part is so true. And I thought I could use it to hopefully educate people who make comments like this. Have to shout out my friend Chris Carazas who had a pretty great (as always) reply to that person’s comment. That’s what actually got me thinking and inspired this post. I’ll send it to you so you can read what he said. It made me laugh. He’s much wittier than me!
Well said!! Couldn't help but think about Job in the Bible who was perfect and upright and shunned evil, but God allowed him to suffer tremendously because of Satan. Then God was angered at Job's friends because they surely thought Job had sinned and should confess them. We all tend to look for a reason for everything, and sometimes it can't be found. Nice job, Sam, of bringing this reminder to just offer compassion to sufferers! You're serving a greater purpose than you realize!! Prayers for you to have a joyful day!!
Thank you, Carol. That is so nice to hear. Job is a fabulous example. And you’re so right, as humans we want a reason for everything and sometimes just sitting with the fact that we don’t have all the answers is the most healing thing we can do.
When I was an admin at a church years ago, I fell down a flight of stairs (at home) and broke my neck. I was in a lot of pain. When I would complain (once I was able to go back to work), my boss (not the pastor) would say something like, "Everyone feels more pain when the weather gets colder." People would come up to me at the end of a church service and ask me how I'm doing. "I'm in a lot of pain," I would say. "Really? Because we're all praying for you." (Meaning?) When my doctor advised me to quit my job, my boss told people that I had "allowed Satan to steal my ministry." I have also stopped going to church. I still have my faith but it doesn't look anything like it did back then.
Linda, I want to cry reading this. I am so sorry for the way those people spoke to you. It can make you feel like you’re somehow failing because you’re not getting better when everyone is praying for you. And we don’t need that kind of pressure and shame on top of the physical and emotional pain we’re already in. I felt similarly, like I was failing and just disappointing everyone at church because they were praying so hard for my healing and it just wasn’t happening. Now I know that no amount of prayer will cure a genetic disease. Letting go of that pressure and shame has helped a lot. I also still have faith, but like you, it looks a lot different than it used to. And I personally think God is okay with that. Sending you a big hug.
Wow, the level of invalidation you experienced breaks my heart. I’m so sorry.
You’ve also just made me realize why I felt icky in response to a text this weekend.
One of my brother’s in-laws I had just seen texted me: “I hope you’re doing alright! It’s tough to feel good in this heat for anyone :/“
It’s like, thank you for reaching out, but what are you trying to say…? Is the “let alone someone who’s chronically ill” implied, or am I being invalidated? I replied in the spirit that I hope (?) it was intended, but the feeling sticks.
Ick. Sorry you have to deal with comments like that and use your limited energy to try to interpret it. I’m going to hope that maybe he was trying to make you feel less alone? By saying it’s so hot everyone is struggling (?) Maybe?? I don’t know, I always want to believe people are well intended with the things they say but so much of what we hear can just feel so invalidating. Just know I see you, and I get it. And I think you’re doing such an amazing job 🫶🏻
Thanks Sam, it was a weird one. I had mentioned something to her and my sister-in-law while I was there. And they were both like YUP IT SUCKS. But my sis-in-law has EDS, and maybe they both do, being they are half-sisters.
Sometimes I find that the people who respond "everyone feels this way" (for example, with neurodivergence) don't realize that everyone in fact, does not..
Like, I ran a 5k for depression awareness in July 2019 feeling zero physical stress, breathing calmly through my nose (though I was red as a beet without knowing why!), and now I need an ice ring and compression calf sleeves just to sit and play with my baby nephew.
I didn't know how lucky I was! It has been a bad heat wave lately. Maybe they're just like, welcome to earth, idk lol. I appreciate you. 🫶🏻
Unfortunately a lot of them don’t 😔 The thing that really gets me though is the judgement and self-righteousness of some. But many of the people at the church we went to weren’t like that. Which is why it felt refreshing and we kept going back. Then Covid hit and things went downhill from there.
Unfortunately it seems most people don’t learn until they become ill themselves or someone close to them does. I don’t wish it on anyone but I do wish people would try a little harder sometimes to understand chronically ill folks.
Sam… I can relate to this story in a big way. I work on the rail network where I live in Australia & in my career, I’ve come face-to-face with people who just want to end it all in a “death by train” scenario, which I decided at the time, was NOT going to happen… But sadly, it did on 3 occasions.
…However, since the start of this year, I’ve been thrust into the situation where I’m left talking to the person who’s clearly suffering on 2 occasions & in both, I managed to talk them out of it & we actually went on to become great friends & they later told me they respected me for one particular reason… That I cared enough to listen to what was affecting them.
….I’m not a professional counsellor (far from it), but I’ve been in that very position myself in wanting to end my suffering but I also got talked out of it. I found it difficult maintaining my composure as they unloaded about their issues as they were pretty sad but knowing I helped give 2 people reasons to go on living (they sought outside help later) really makes me feel good but I could’ve almost lost them both due to the overly impatient police officers who showed up & went to pounce on them & this almost made them fall onto the high voltage power lines. If people are suffering from a “hidden” issue, all they really may need is someone to just sit & listen or talk to rather than just bottle it up & make it worse. At least… That’s what I think on this matter.
Wow, Gerard. Thank you for sharing and thank you for the important work you do! I think one of the big problems is that we’re a society of “fixers” who are very uncomfortable with pain, so we often rush to “fix” a person’s suffering by offering advice or solutions. But what I’ve learned is that can just make a person feel more broken and like a project that needs fixing. I’ve found the most loving, helpful thing to do is listen, ask questions to try to understand better, validate a person’s pain, and just be with them. Even if we feel like we have no solutions or don’t know what to say, refusing to turn away can be so healing. I’m so proud of you for helping people to go on living like you have.
I also experienced countless versions of these sayings over the years. I'm so glad this isn't the heart of God. People often say things that don't make sense when they don't know what else to say (or they have bad theology). Eugene Peterson has beautiful quotes about the need to dignify people who suffer, seeing them as people we can LEARN from and LOOK UP to, in some ways, rather than pity — or, as you said, reduce to a prayer request. We know about resilience and hope in ways many never will.
At the same time, I'm also learning how, though it wasn't my fault that terrible things happened to me, I do have a certain level of responsibility for keeping my mind in check. That's why this brain rewiring program (DNRS) has been so transformative for me. I've neglected speaking truth and have instead given into despair and anger and basically cursing myself, God, others, and my own body when it's most painful. There's a different way, and it's leading me out finally. I think most of life carries this kind of tension. Both and.
Hi Bailey, I’m really sorry you’ve been on the receiving end of these types of sayings too. I know people often just don’t know what to say so I hope this piece offers some insight for folks who may encounter someone dealing with health issues in their church or community.
The mind IS an extremely powerful thing! Brain plasticity and the advancements in nervous system knowledge and work gives me a lot of hope. I wish you so much success with the brain retraining program.
Oh Sam, this resonated with me so much. I had a similar experience with someone telling me something almost identical to what you were told, not about being physically sick, but the circumstance I have found myself in. Thank you for sharing this and for the beautiful way you explained such a difficult topic. Sending you so much love!! 🤍
Thank you. I’m really sorry someone said something similar to you. That must’ve felt awful. You deserve so much compassion and respect for all you’ve been through, not judgement. People just have no clue sometimes. Sending a big hug your way.
Ugh this resonates hard. I’m sorry. Good intentions don’t out-weigh harm, no matter if they don’t know what else to say. To that I say, well get creative! This is such an important topic though. It’s not just a “moral failing” to not get better, it becomes a spiritual failing - not enough belief, too much “sin” etc. Awful.
I remember my best friend in Sunday school once told me I wasn’t sick I was possessed and I was like… pardon me?! We are 12! What is wrong with you? (I didn’t say any of that out loud, though I wish I had!)
I’m sorry it resonates because I assume that means you’ve experienced these hurtful things too. I understand it’s a hard thing for a lot of people and they often don’t know what to say. That’s why I wrote this and offered some options of simple lines that help and don’t hurt. I hope it reaches someone and makes them think a little more.
As I read this, I found myself thinking about the long, dark night I've been walking through over the past few years.
One of the lessons that journey has slowly—and sometimes painfully—taught me is that suffering has a way of revealing how quickly we try to explain one another instead of simply remaining with one another.
Your words reminded me that there is an enormous difference between becoming someone's prayer request and remaining a person made in the image of God.
I found myself thinking of the people Jesus encountered. The disciples wanted to know who sinned. Others kept their distance from the leper. The crowds reduced the woman with the bleeding disorder to her condition. Jesus seemed almost incapable of doing that. Before He addressed the circumstance, He restored the person. He saw someone worthy of love long before they were "fixed."
That has become deeply meaningful to me.
Thank you for reminding us that compassionate presence is not a consolation prize when answers don't come. Sometimes it is the very place where love becomes most visible.
Thank you for writing this with such honesty and grace.
Thank you, Kevin. What you’re speaking to here—about the true nature of Jesus—is huge for me too. I have a hard time identifying with a lot of “Christians” these days. But I absolutely still consider myself a follower of Christ and I strive to have a heart like His. That’s what’s important to me. Thank you for your kind words.
Sam, I understand that distinction deeply. There are times when what is presented in Christ’s name can feel painfully unlike the Christ we encounter in the Gospels. Yet He remains…still drawing us toward the kind of love that sees, restores, and stays near. I think the desire to have a heart like His is where our shared humanity begins to become visible again. I’m grateful your writing brings us back to that.
I'm so sorry you got this ridiculous note. It reminds me of how after my husband had a massive stroke every time he made the least little bit of improvement, the hardcore religious people in the family took credit for his improvement because their prayers have been answered. But when he plateaued or backslid a little bit they were silent. It was maddening.
You described my own biological family. My parents blamed me for my stomach cancer and lack of church attendance on my kid's acting out. Strangers were more supportive than my family!
So sorry to hear this, Kathleen. I hope you refuse to believe that any of that is true. I think as humans, we are often desperate for answers and a sense of control surrounding things like that. Maybe blaming those hardships on lack of church attendance provided that illusion for them. Please know it’s not your fault. Hugs
This is beautifully written and expressed, Sam. You offer kindness and compassion here. Thank you for being so loving in the face of harm.
Ive honestly reached the point where I feel spontaneously sick when someone gaslights a person with chronic illness by suggesting they need to pray and repent. I have no more patience for it. And I say this as a convent educated Catholic. From my perspective, it is dismissive and it also victim blames, whether the person means it that way or not. But it also does something else that is insidious (Im using that word a lot lately). It absolves the person saying it of any responsibility to fight for those marginalised within the disability community. If we blame a lack of faith for a person's circumstances, we dont have to fight to change the systems that damage them, or step up to give practical, financial or physical help. We also dont have to challenge our own ableism and hidden beliefs about what living with disability means. In my opnion, it is never a loving thing to suggest that a disabled or chronically ill person pray and/or repent. It is emotional violence - gaslighting and victim-blaming disguised as help. Its emotional and spiritual abuse and I have no patience with it at all.
Thank you for shining a patient and respectful light on this phenomenon. 💚
Thank you for reading and sharing your thoughts. I’ve been told one of my biggest strengths is my patience (I used to work with very high support needs kids with autism and think I developed it there!) I guess I also have this tendency to always look at a rude or dismissive person and analyze why I think they are the way they are. And I tell myself things like, “well maybe they’ve been brainwashed by high control religion and have their own trauma that’s causing them to be the way they are.” Maybe I’m naive or give people too many passes but that’s where my patience and compassion come from.
What you said about absolving people of any responsibility to fight for marginalized groups is spot-on and something I didn’t even think about.
And I hope I made it clear that I don’t think suggesting a disabled person pray more themselves is kind or loving at all, but I do think praying FOR someone else is a kind thing to do. I think it often stems from wanting to make a hurting person’s situation better and feeling helpless, so people offer prayer.
But, that being said, there is so much more a person can do to truly help a chronically ill person. And I hope this essay is a start in educating people on that. Thought it might be better received by very religious people if I came at it from a loving, gentle angle. But this stuff does make my blood boil sometimes too.
You made it absolutely clear. My comment is in 100% support of you, your writing and very specifically this post. I love this post and how eloquent and clear your writing always is. Im sorry that my comment suggested otherwise. Im lamenting my own lack of patience in this area, mainly because Ive been told numerous times that I should pray more/better. Most recently I was told by someone that the reason i was was still ill was because I hadnt prayed with enough conviction and wasn't trusting God and as a rrsult eas allowing Satan in. A very painful weight to lay on someone. I relate to your experiences and stand in full solidarity. You and your writing are both fantastic. 💚
Thank you for letting me know that! I worried that when I said I thought people praying for my healing was a kind thing to do, that maybe I wasn’t clear. Now, telling someone THEY need to pray more to be healed is not okay at all. And I am so sorry you’ve experienced this. That is such a heavy weight to lay on you, especially on top of all you’re already carrying. I personally think you’re doing beautiful job of living your life as fully as possible with the conditions you deal with. I don’t believe you’ve let Satan in one tiny bit, but the person that said that to you might want to reassess their own life. I hope you didn’t let that comment get you down because I think you’re fabulous. You encourage me and make me laugh constantly. You also help me step more fully into being my authentic self. Sending love always ❤️
Thank you, Sam. I didnt believe it either. Her comment surprised me as it was so judgemental and unkind, but I didnt for one minute think it was true. I felt sad that she was believing something so punitive and wrong about humanity. It was like being transported back to the middle ages. It was such a harsh view of faith and spirituality which I just dont share. I also felt angry at her entitlement to speak about someone else's vulnerability in those terms. It lacked so much compassion and empathy. Thank you for your kind words, support and solidarity. I value and appreciate all three, and you. It really means a lot to hear that I help you step more into being your authentic self. Its such a beautiful thing to say. Likewise, honestly. ❤️
No one should be judging you. You know the truth of your condition better than anyone. I'm sorry you had someone say that to you. Some people are just self righteous idiots.
I can understand you,Sam. When my son was diagnosed with epilepsy, autism and so many other problems, numerous people almost told me to my face that it was my fault. That I carried bad genes, I did bad things in my pregnancy, I was a bad mom. I produced defective goods, and thus failed in my only function. Some sort of these things were already going on in my own head. I didn't need those words in my life.
I would have spiraled into depression perhaps, if not for my husband. He was rock solid beside me.
I do have faith, it helped me a lot. But my faith teaches me that it is never our fault if misfortune or trouble choose us, it comes to help us understand ourselves better.
Thank you for sharing a piece of your story. I can’t imagine how hard it must’ve been to hear those things. And like you needed more weight on your back. I’m so glad you had a husband like yours to support you.
I resonate ! We are preparing for family arriving tomorrow, houseguests on Monday and then leaving town on Wednesday for 2 weeks for multiple wonderful connections and occasions in several communities in the Bay Area. There is much to Do
And I have been Tired 😪. What am I doing wrong?
🤪
I stand up to get something done and I feel sh__ty
Do I drink coffee and Push through or do I go back to bed. ? Or do I jump off a bridge ? ( Never that, but I do understand why it happens )
I have subscribed and look forward to community.
I am So Blessed with a Wonderful Family who are quite willing to help (when they can) But
Enough. Time to Rest a bit and get up and Do a bit.
Hi Kristin. Thanks for subscribing, it’s great to have you here! It can be really overwhelming to have so much to do with a body that doesn’t feel well. I don’t believe you being tired means you’re doing anything wrong. And I’ve been chronically ill for many years and am still learning how to balance needing to push through with resting enough. It’s exhausting just to have to mentally assess these things constantly. I hope you are able to support your body’s needs the best you can in the upcoming weeks. Sending you love and strength.
Thank you for sharing this. I am going through an exceptionally difficult time right now and it’s so hard because people don’t know what to say and sometimes it eats up they say things that hurt me without truly understanding what the consequences of their words are. But regardless of the intent the results still remain that a group of us end up feeling isolated and disconnected from former Church leaders or community members because of the lack of understanding and true empathy as to what we are going through. It is the most isolated and scary time of my life.
I’m so sorry you’re going through such a scary and isolating time. I’ve been there. I’ve found a lot of support though here in the chronic illness community online. I hope you find that too. Always here if you need a listening ear ❤️
It’s so true that a comment like that can be well intentioned but it’s just othering that is dressed up in a different costume. This is something happening to YOU and not to ME. This is what YOU need to do to make it “right”. That framing works until something inevitably happens to ME and then it’s just US, which it only ever is and was the whole time, which is why genuine love and compassion and connection is always the bridge. It’s our common humanity. This could just as easily be happening to me. I see me in you. I see you in me. The othering inevitably feeds the shame. I’m just glad that instead of swallowing the comment that you came to digest here where we have one big digestive system that can much more efficiently and effectively convert it into fertilizer for your garden ❤️
Thanks, David. I always love your insights. The othering part is so true. And I thought I could use it to hopefully educate people who make comments like this. Have to shout out my friend Chris Carazas who had a pretty great (as always) reply to that person’s comment. That’s what actually got me thinking and inspired this post. I’ll send it to you so you can read what he said. It made me laugh. He’s much wittier than me!
I’d love to see it! I’m sure it was something. He writes so beautifully.
Amen, David.
Well said!! Couldn't help but think about Job in the Bible who was perfect and upright and shunned evil, but God allowed him to suffer tremendously because of Satan. Then God was angered at Job's friends because they surely thought Job had sinned and should confess them. We all tend to look for a reason for everything, and sometimes it can't be found. Nice job, Sam, of bringing this reminder to just offer compassion to sufferers! You're serving a greater purpose than you realize!! Prayers for you to have a joyful day!!
Thank you, Carol. That is so nice to hear. Job is a fabulous example. And you’re so right, as humans we want a reason for everything and sometimes just sitting with the fact that we don’t have all the answers is the most healing thing we can do.
Yes
When I was an admin at a church years ago, I fell down a flight of stairs (at home) and broke my neck. I was in a lot of pain. When I would complain (once I was able to go back to work), my boss (not the pastor) would say something like, "Everyone feels more pain when the weather gets colder." People would come up to me at the end of a church service and ask me how I'm doing. "I'm in a lot of pain," I would say. "Really? Because we're all praying for you." (Meaning?) When my doctor advised me to quit my job, my boss told people that I had "allowed Satan to steal my ministry." I have also stopped going to church. I still have my faith but it doesn't look anything like it did back then.
Linda, I want to cry reading this. I am so sorry for the way those people spoke to you. It can make you feel like you’re somehow failing because you’re not getting better when everyone is praying for you. And we don’t need that kind of pressure and shame on top of the physical and emotional pain we’re already in. I felt similarly, like I was failing and just disappointing everyone at church because they were praying so hard for my healing and it just wasn’t happening. Now I know that no amount of prayer will cure a genetic disease. Letting go of that pressure and shame has helped a lot. I also still have faith, but like you, it looks a lot different than it used to. And I personally think God is okay with that. Sending you a big hug.
Hugz back, Sam.
Wow, the level of invalidation you experienced breaks my heart. I’m so sorry.
You’ve also just made me realize why I felt icky in response to a text this weekend.
One of my brother’s in-laws I had just seen texted me: “I hope you’re doing alright! It’s tough to feel good in this heat for anyone :/“
It’s like, thank you for reaching out, but what are you trying to say…? Is the “let alone someone who’s chronically ill” implied, or am I being invalidated? I replied in the spirit that I hope (?) it was intended, but the feeling sticks.
Ick. Sorry you have to deal with comments like that and use your limited energy to try to interpret it. I’m going to hope that maybe he was trying to make you feel less alone? By saying it’s so hot everyone is struggling (?) Maybe?? I don’t know, I always want to believe people are well intended with the things they say but so much of what we hear can just feel so invalidating. Just know I see you, and I get it. And I think you’re doing such an amazing job 🫶🏻
Thanks Sam, it was a weird one. I had mentioned something to her and my sister-in-law while I was there. And they were both like YUP IT SUCKS. But my sis-in-law has EDS, and maybe they both do, being they are half-sisters.
Sometimes I find that the people who respond "everyone feels this way" (for example, with neurodivergence) don't realize that everyone in fact, does not..
Like, I ran a 5k for depression awareness in July 2019 feeling zero physical stress, breathing calmly through my nose (though I was red as a beet without knowing why!), and now I need an ice ring and compression calf sleeves just to sit and play with my baby nephew.
I didn't know how lucky I was! It has been a bad heat wave lately. Maybe they're just like, welcome to earth, idk lol. I appreciate you. 🫶🏻
It would be so nice if professing Christians would actually read the Bible. Or at least use common sense and compassion.
Unfortunately a lot of them don’t 😔 The thing that really gets me though is the judgement and self-righteousness of some. But many of the people at the church we went to weren’t like that. Which is why it felt refreshing and we kept going back. Then Covid hit and things went downhill from there.
Same. When Covid hit, things went completely downhill at our church.
Thank you Sam. We've likely all received such comments and some are harder to brush off than others.
Being chronically ill is not our choice and not our fault. Not being healed is also not our choice. It never means that God doesn't love us.
Oh, when will they learn?
Unfortunately it seems most people don’t learn until they become ill themselves or someone close to them does. I don’t wish it on anyone but I do wish people would try a little harder sometimes to understand chronically ill folks.
Sam… I can relate to this story in a big way. I work on the rail network where I live in Australia & in my career, I’ve come face-to-face with people who just want to end it all in a “death by train” scenario, which I decided at the time, was NOT going to happen… But sadly, it did on 3 occasions.
…However, since the start of this year, I’ve been thrust into the situation where I’m left talking to the person who’s clearly suffering on 2 occasions & in both, I managed to talk them out of it & we actually went on to become great friends & they later told me they respected me for one particular reason… That I cared enough to listen to what was affecting them.
….I’m not a professional counsellor (far from it), but I’ve been in that very position myself in wanting to end my suffering but I also got talked out of it. I found it difficult maintaining my composure as they unloaded about their issues as they were pretty sad but knowing I helped give 2 people reasons to go on living (they sought outside help later) really makes me feel good but I could’ve almost lost them both due to the overly impatient police officers who showed up & went to pounce on them & this almost made them fall onto the high voltage power lines. If people are suffering from a “hidden” issue, all they really may need is someone to just sit & listen or talk to rather than just bottle it up & make it worse. At least… That’s what I think on this matter.
Wow, Gerard. Thank you for sharing and thank you for the important work you do! I think one of the big problems is that we’re a society of “fixers” who are very uncomfortable with pain, so we often rush to “fix” a person’s suffering by offering advice or solutions. But what I’ve learned is that can just make a person feel more broken and like a project that needs fixing. I’ve found the most loving, helpful thing to do is listen, ask questions to try to understand better, validate a person’s pain, and just be with them. Even if we feel like we have no solutions or don’t know what to say, refusing to turn away can be so healing. I’m so proud of you for helping people to go on living like you have.
I also experienced countless versions of these sayings over the years. I'm so glad this isn't the heart of God. People often say things that don't make sense when they don't know what else to say (or they have bad theology). Eugene Peterson has beautiful quotes about the need to dignify people who suffer, seeing them as people we can LEARN from and LOOK UP to, in some ways, rather than pity — or, as you said, reduce to a prayer request. We know about resilience and hope in ways many never will.
At the same time, I'm also learning how, though it wasn't my fault that terrible things happened to me, I do have a certain level of responsibility for keeping my mind in check. That's why this brain rewiring program (DNRS) has been so transformative for me. I've neglected speaking truth and have instead given into despair and anger and basically cursing myself, God, others, and my own body when it's most painful. There's a different way, and it's leading me out finally. I think most of life carries this kind of tension. Both and.
Keep writing, Sam! <3
Hi Bailey, I’m really sorry you’ve been on the receiving end of these types of sayings too. I know people often just don’t know what to say so I hope this piece offers some insight for folks who may encounter someone dealing with health issues in their church or community.
The mind IS an extremely powerful thing! Brain plasticity and the advancements in nervous system knowledge and work gives me a lot of hope. I wish you so much success with the brain retraining program.
Oh Sam, this resonated with me so much. I had a similar experience with someone telling me something almost identical to what you were told, not about being physically sick, but the circumstance I have found myself in. Thank you for sharing this and for the beautiful way you explained such a difficult topic. Sending you so much love!! 🤍
Thank you. I’m really sorry someone said something similar to you. That must’ve felt awful. You deserve so much compassion and respect for all you’ve been through, not judgement. People just have no clue sometimes. Sending a big hug your way.
Ugh this resonates hard. I’m sorry. Good intentions don’t out-weigh harm, no matter if they don’t know what else to say. To that I say, well get creative! This is such an important topic though. It’s not just a “moral failing” to not get better, it becomes a spiritual failing - not enough belief, too much “sin” etc. Awful.
I remember my best friend in Sunday school once told me I wasn’t sick I was possessed and I was like… pardon me?! We are 12! What is wrong with you? (I didn’t say any of that out loud, though I wish I had!)
I’m sorry it resonates because I assume that means you’ve experienced these hurtful things too. I understand it’s a hard thing for a lot of people and they often don’t know what to say. That’s why I wrote this and offered some options of simple lines that help and don’t hurt. I hope it reaches someone and makes them think a little more.
Sam,
As I read this, I found myself thinking about the long, dark night I've been walking through over the past few years.
One of the lessons that journey has slowly—and sometimes painfully—taught me is that suffering has a way of revealing how quickly we try to explain one another instead of simply remaining with one another.
Your words reminded me that there is an enormous difference between becoming someone's prayer request and remaining a person made in the image of God.
I found myself thinking of the people Jesus encountered. The disciples wanted to know who sinned. Others kept their distance from the leper. The crowds reduced the woman with the bleeding disorder to her condition. Jesus seemed almost incapable of doing that. Before He addressed the circumstance, He restored the person. He saw someone worthy of love long before they were "fixed."
That has become deeply meaningful to me.
Thank you for reminding us that compassionate presence is not a consolation prize when answers don't come. Sometimes it is the very place where love becomes most visible.
Thank you for writing this with such honesty and grace.
Thank you, Kevin. What you’re speaking to here—about the true nature of Jesus—is huge for me too. I have a hard time identifying with a lot of “Christians” these days. But I absolutely still consider myself a follower of Christ and I strive to have a heart like His. That’s what’s important to me. Thank you for your kind words.
Sam, I understand that distinction deeply. There are times when what is presented in Christ’s name can feel painfully unlike the Christ we encounter in the Gospels. Yet He remains…still drawing us toward the kind of love that sees, restores, and stays near. I think the desire to have a heart like His is where our shared humanity begins to become visible again. I’m grateful your writing brings us back to that.
I'm so sorry you got this ridiculous note. It reminds me of how after my husband had a massive stroke every time he made the least little bit of improvement, the hardcore religious people in the family took credit for his improvement because their prayers have been answered. But when he plateaued or backslid a little bit they were silent. It was maddening.
Oh wow that does sound maddening. I’m sorry you had to deal with that, on top of everything else.
You described my own biological family. My parents blamed me for my stomach cancer and lack of church attendance on my kid's acting out. Strangers were more supportive than my family!
So sorry to hear this, Kathleen. I hope you refuse to believe that any of that is true. I think as humans, we are often desperate for answers and a sense of control surrounding things like that. Maybe blaming those hardships on lack of church attendance provided that illusion for them. Please know it’s not your fault. Hugs
This is beautifully written and expressed, Sam. You offer kindness and compassion here. Thank you for being so loving in the face of harm.
Ive honestly reached the point where I feel spontaneously sick when someone gaslights a person with chronic illness by suggesting they need to pray and repent. I have no more patience for it. And I say this as a convent educated Catholic. From my perspective, it is dismissive and it also victim blames, whether the person means it that way or not. But it also does something else that is insidious (Im using that word a lot lately). It absolves the person saying it of any responsibility to fight for those marginalised within the disability community. If we blame a lack of faith for a person's circumstances, we dont have to fight to change the systems that damage them, or step up to give practical, financial or physical help. We also dont have to challenge our own ableism and hidden beliefs about what living with disability means. In my opnion, it is never a loving thing to suggest that a disabled or chronically ill person pray and/or repent. It is emotional violence - gaslighting and victim-blaming disguised as help. Its emotional and spiritual abuse and I have no patience with it at all.
Thank you for shining a patient and respectful light on this phenomenon. 💚
Thank you for reading and sharing your thoughts. I’ve been told one of my biggest strengths is my patience (I used to work with very high support needs kids with autism and think I developed it there!) I guess I also have this tendency to always look at a rude or dismissive person and analyze why I think they are the way they are. And I tell myself things like, “well maybe they’ve been brainwashed by high control religion and have their own trauma that’s causing them to be the way they are.” Maybe I’m naive or give people too many passes but that’s where my patience and compassion come from.
What you said about absolving people of any responsibility to fight for marginalized groups is spot-on and something I didn’t even think about.
And I hope I made it clear that I don’t think suggesting a disabled person pray more themselves is kind or loving at all, but I do think praying FOR someone else is a kind thing to do. I think it often stems from wanting to make a hurting person’s situation better and feeling helpless, so people offer prayer.
But, that being said, there is so much more a person can do to truly help a chronically ill person. And I hope this essay is a start in educating people on that. Thought it might be better received by very religious people if I came at it from a loving, gentle angle. But this stuff does make my blood boil sometimes too.
Always grateful for your thoughts on this stuff!
You made it absolutely clear. My comment is in 100% support of you, your writing and very specifically this post. I love this post and how eloquent and clear your writing always is. Im sorry that my comment suggested otherwise. Im lamenting my own lack of patience in this area, mainly because Ive been told numerous times that I should pray more/better. Most recently I was told by someone that the reason i was was still ill was because I hadnt prayed with enough conviction and wasn't trusting God and as a rrsult eas allowing Satan in. A very painful weight to lay on someone. I relate to your experiences and stand in full solidarity. You and your writing are both fantastic. 💚
Thank you for letting me know that! I worried that when I said I thought people praying for my healing was a kind thing to do, that maybe I wasn’t clear. Now, telling someone THEY need to pray more to be healed is not okay at all. And I am so sorry you’ve experienced this. That is such a heavy weight to lay on you, especially on top of all you’re already carrying. I personally think you’re doing beautiful job of living your life as fully as possible with the conditions you deal with. I don’t believe you’ve let Satan in one tiny bit, but the person that said that to you might want to reassess their own life. I hope you didn’t let that comment get you down because I think you’re fabulous. You encourage me and make me laugh constantly. You also help me step more fully into being my authentic self. Sending love always ❤️
Thank you, Sam. I didnt believe it either. Her comment surprised me as it was so judgemental and unkind, but I didnt for one minute think it was true. I felt sad that she was believing something so punitive and wrong about humanity. It was like being transported back to the middle ages. It was such a harsh view of faith and spirituality which I just dont share. I also felt angry at her entitlement to speak about someone else's vulnerability in those terms. It lacked so much compassion and empathy. Thank you for your kind words, support and solidarity. I value and appreciate all three, and you. It really means a lot to hear that I help you step more into being your authentic self. Its such a beautiful thing to say. Likewise, honestly. ❤️
No one should be judging you. You know the truth of your condition better than anyone. I'm sorry you had someone say that to you. Some people are just self righteous idiots.
Thank you, yes, agreed.
I’m sorry! That word of faith / prosperity mess is a mess! I could tell stories for days… 😵💫
I’m sorry you have stories too 💔
I can understand you,Sam. When my son was diagnosed with epilepsy, autism and so many other problems, numerous people almost told me to my face that it was my fault. That I carried bad genes, I did bad things in my pregnancy, I was a bad mom. I produced defective goods, and thus failed in my only function. Some sort of these things were already going on in my own head. I didn't need those words in my life.
I would have spiraled into depression perhaps, if not for my husband. He was rock solid beside me.
I do have faith, it helped me a lot. But my faith teaches me that it is never our fault if misfortune or trouble choose us, it comes to help us understand ourselves better.
Lots of love. You are a brave sou.l
Thank you for sharing a piece of your story. I can’t imagine how hard it must’ve been to hear those things. And like you needed more weight on your back. I’m so glad you had a husband like yours to support you.
Amen
YES
I resonate ! We are preparing for family arriving tomorrow, houseguests on Monday and then leaving town on Wednesday for 2 weeks for multiple wonderful connections and occasions in several communities in the Bay Area. There is much to Do
And I have been Tired 😪. What am I doing wrong?
🤪
I stand up to get something done and I feel sh__ty
Do I drink coffee and Push through or do I go back to bed. ? Or do I jump off a bridge ? ( Never that, but I do understand why it happens )
I have subscribed and look forward to community.
I am So Blessed with a Wonderful Family who are quite willing to help (when they can) But
Enough. Time to Rest a bit and get up and Do a bit.
🫶🏻
Hi Kristin. Thanks for subscribing, it’s great to have you here! It can be really overwhelming to have so much to do with a body that doesn’t feel well. I don’t believe you being tired means you’re doing anything wrong. And I’ve been chronically ill for many years and am still learning how to balance needing to push through with resting enough. It’s exhausting just to have to mentally assess these things constantly. I hope you are able to support your body’s needs the best you can in the upcoming weeks. Sending you love and strength.
Thank you for sharing this. I am going through an exceptionally difficult time right now and it’s so hard because people don’t know what to say and sometimes it eats up they say things that hurt me without truly understanding what the consequences of their words are. But regardless of the intent the results still remain that a group of us end up feeling isolated and disconnected from former Church leaders or community members because of the lack of understanding and true empathy as to what we are going through. It is the most isolated and scary time of my life.
I’m so sorry you’re going through such a scary and isolating time. I’ve been there. I’ve found a lot of support though here in the chronic illness community online. I hope you find that too. Always here if you need a listening ear ❤️
Thank you I really appreciate that and yes I find the online community have truly been incredible.