I'm allergic to my tears - I can't cry. I've become excellent at hiding my pain. But why should we hide it? Why shouldn't we allow people to see our suffering? Ask them to face our disabilities?
I have been *practicing* telling people who ask how I am if I am better or worse than before. I don’t want to give a concrete value statement in the moment that isn’t any of their business, but I am also trying to unlearn the habit of lying about it to protect their feelings.
It’s a tough thing to unlearn. I generally ask people not to ask that and instead ask me if anything interesting happened in my day or ‘how can I support you?’. Because do you feel better or how are you feeling is nearly impossible to answer truthfully without upsetting people.
Thank you for letting the world in on the realities of these illnesses. People really have no idea how bad it can be. And to have a mast cell reaction to your own tears? That’s such a cruel twist. I’m so sorry, my friend.
I had no idea. I thought it was just me. I really did and now I'm kicking myself for not thinking of this sooner. I don't know how it didn't occur to me it was the MCAS. I couldn't keep myself from crying when I saw we lost Tinu and a family member tried to help me stop. She grabbed a compress to try and help with the immediate swelling of my eyes that will last for days. And the flushing, the head pain, the palpitations, the stomach distress, the worsening POTS symptoms.
How do we not cry when we feel grief? I've become practiced at breathing through the need to cry. I'm doing it right now. Sometimes it's too much and can't be held in.
Of all the specialists, not one understands MCAS. I learn about my health from people like you in our community and I can't thank you enough for it.
I’m so sorry you’re going through the same thing - it absolutely sucks to be allergic to crying. People take it for granted - when it causes you legit pain it is quite complicated.
I still can’t believe we lost her. I know I shouldn’t be surprised - we are after all discarding disabled people and refusing to protect them - but it’s hard to imagine going forward without her.
I don’t have great tips for feeling emotions without the tears I’m afraid. I usually do restorative yoga in bed and have found some positions that seem to release grief. It took a LOT of trial and error though. And I write. I write SO much when I’m sad, grieving, angry etc.
That’s my story too with the invisible illness of spinal stenosis heaved upon me at the age of 52…..I’m now 63 and things have only begun to progress further….endangering me and my life as I know it. Up for next surgical procedure due to it traveling to my neck from lower back.
Thanks for your posts and I’ll keep posting too as we need a community of help.
Hi Kristine - thank you so much for the kind comment and I’m so glad the article resonated with you.
It can be hard being a caregiver - and my hope is that by being open and vulnerable about my struggles I might help others learn how to best care and support those of us with chronic illness.
Sending big gentle hugs. I’m exhausted. Flared all night tonight and it’s just a reminder of how even when we do everything right - our bodies can and do still go haywire. Hope you’re doing ok 💜
Thank you for sharing this. Being more visible, being less apologetic about out needs and our disabling conditions is what I want for Armchair Rebel, what I want for all of us. I’m also sorry you’ve had negative feedback. The prophet is little honoured in their own country ❤️🩹
I think it’s a great goal! The more of us being visible and less apologetic- hopefully the better others will treat us. Hopefully they will get over their discomfort at disability and start accepting us fully as we are - without hiding.
I’m glad you shared this. I hope you felt some relief being transparent and true…the world really is shitty to those who can’t play the pretend to be perfect game. So much judgment and unwanted advice.
Yesterday I walked around downtown Milwaukee after work, I usually just spend all my off time lying in bed at the hotel. I overdid it and ran out of spoons, had to stop 6 times and sit on the sidewalk until I could get up and walk another few feet. It was exhausting and stressful and embarrassing.
I know there are lots of folks here who get it. ❤️
Thank you so much for the support Eileen. I’ve had some nasty judgement since sharing it from people in my life who either didn’t read the whole thing - or read it and decided to judge anyways. Completely missing the point of the piece.
I’m so sorry about your rough walk - I’ve been there! I once had to sit down in our underground PATH (not sure if you’ve ever been to Toronto but it’s a huge underground network of paths and shops and businesses connecting all of the downtown) and a security guard came and said ‘you can’t sit here.’ I guess they’re tasked with deterring panhandlers and homeless people (who I think should be allowed to sit down there because Canadian elements are HARSH) but I told him “either you let me sit here or you’re going to be calling 911 - you can choose what’s more disruptive to the customers.’
Thank you for sharing this. I'm sorry you struggle with all that. Having been all but bedbound from severe fatigue and chronic pain for several years (most of high school), I can empathize with at least some of it.
I remember back in my 20s I memorized routes across the kitchen. All the places I could hold on for support, and where I needed to push off with my arms so I could stumble the few steps in the correct direction to grab the next improvised handhold. But it still took several years before it even occurred to me that I should use a cane. That it was okay to show my disability that way. That people wouldn't see an apparently healthy kid (outwardly, I look the same now in my 40s as I did at 17) and think I was faking it. I needed the extra support and balance, but I tried so hard to hide it. So stupid.
And, yeah, I have a habit of hiding my pain. My nerves are hypersensitive, so I'm always in pain. Constant widespread low level pain that I usually relegate into the background noise of my life. (That includes tinnitus, and I once explained part of what I deal with as full-body tinnitus.) But also deep aches and sharp spikes and pins and needles, all coming and going randomly. I never know where the next one will be, how intense it will be, how long it will last. There's no point in showing that to people. It doesn't help me. It makes the empathetic ones hurt and others look at me with unwanted pity. So I smile. I sit quietly. I don't scream. I don't wince. I keep my breathing steady. I try to walk normally. I endure.
I remember I was at the Mayo Clinic for an overhaul and the neurologist asked me to walk down the hall without my cane. I figured it was important to let him see, so I stopped holding back. He stopped me. "Why are you walking like that? You're sending out pain signals. You should be careful about that." It was so strange. The Clinic was so welcoming and supportive. They live up to their motto of "patients first." They listen. They care. They work with the patient as a partner instead of handing down decrees. And here he was telling me in the middle of an exam that I should work harder on hiding my pain so as not to inflict it on others. All because for once, for the sake of the exam, I let my guard down and stopped spending spoons on hiding my pain so that he could see the truth.
I’m so sorry you experienced that. It’s awful when even a doctor tells us to hide our pain. I don’t understand why as a society we are so against witnessing pain, suffering and death.
Today was the anniversary of my Mom’s passing - and she died when I was a teenager. I was with her through nine months of terminal pancreatic cancer. It wasn’t pretty - but I never wanted her to hide her pain. I didn’t want to look away. I consider that time with her as a gift.
I have been *practicing* telling people who ask how I am if I am better or worse than before. I don’t want to give a concrete value statement in the moment that isn’t any of their business, but I am also trying to unlearn the habit of lying about it to protect their feelings.
It’s a tough thing to unlearn. I generally ask people not to ask that and instead ask me if anything interesting happened in my day or ‘how can I support you?’. Because do you feel better or how are you feeling is nearly impossible to answer truthfully without upsetting people.
Thank you for letting the world in on the realities of these illnesses. People really have no idea how bad it can be. And to have a mast cell reaction to your own tears? That’s such a cruel twist. I’m so sorry, my friend.
It really is a cruel twist - and doesn’t that just sum up mcas perfectly? It’s a disease full of contradictions and cruel twists.
I hate that so many more people are going to experience it thanks to covid. I wish I could convince them how not worth it is
I had no idea. I thought it was just me. I really did and now I'm kicking myself for not thinking of this sooner. I don't know how it didn't occur to me it was the MCAS. I couldn't keep myself from crying when I saw we lost Tinu and a family member tried to help me stop. She grabbed a compress to try and help with the immediate swelling of my eyes that will last for days. And the flushing, the head pain, the palpitations, the stomach distress, the worsening POTS symptoms.
How do we not cry when we feel grief? I've become practiced at breathing through the need to cry. I'm doing it right now. Sometimes it's too much and can't be held in.
Of all the specialists, not one understands MCAS. I learn about my health from people like you in our community and I can't thank you enough for it.
I’m so sorry you’re going through the same thing - it absolutely sucks to be allergic to crying. People take it for granted - when it causes you legit pain it is quite complicated.
I still can’t believe we lost her. I know I shouldn’t be surprised - we are after all discarding disabled people and refusing to protect them - but it’s hard to imagine going forward without her.
I don’t have great tips for feeling emotions without the tears I’m afraid. I usually do restorative yoga in bed and have found some positions that seem to release grief. It took a LOT of trial and error though. And I write. I write SO much when I’m sad, grieving, angry etc.
That’s my story too with the invisible illness of spinal stenosis heaved upon me at the age of 52…..I’m now 63 and things have only begun to progress further….endangering me and my life as I know it. Up for next surgical procedure due to it traveling to my neck from lower back.
Thanks for your posts and I’ll keep posting too as we need a community of help.
💝
You’re welcome - and thank you for sharing. We absolutely do need and deserve help. I wish there was more of it.
Good luck with your surgery!
Kelly,
I found you on Bluesky and knew I had to read more of your work. Thank you for a glimpse of reality and what you endure daily.
I have been a caregiver most of my life, even in hospice. I’m here to learn and support you and the community.
Kristine
Hi Kristine - thank you so much for the kind comment and I’m so glad the article resonated with you.
It can be hard being a caregiver - and my hope is that by being open and vulnerable about my struggles I might help others learn how to best care and support those of us with chronic illness.
Crying. 48+ years with chronic illness. I'm SOOOOO tired.
Sending big gentle hugs. I’m exhausted. Flared all night tonight and it’s just a reminder of how even when we do everything right - our bodies can and do still go haywire. Hope you’re doing ok 💜
Thank you for sharing this. Being more visible, being less apologetic about out needs and our disabling conditions is what I want for Armchair Rebel, what I want for all of us. I’m also sorry you’ve had negative feedback. The prophet is little honoured in their own country ❤️🩹
I think it’s a great goal! The more of us being visible and less apologetic- hopefully the better others will treat us. Hopefully they will get over their discomfort at disability and start accepting us fully as we are - without hiding.
This is a great piece, thank you for writing and sharing it x
Thank you for being willing to read and not look away xx
Thank you for sharing this
You’re welcome - thank you for reading!
I’m glad you shared this. I hope you felt some relief being transparent and true…the world really is shitty to those who can’t play the pretend to be perfect game. So much judgment and unwanted advice.
Yesterday I walked around downtown Milwaukee after work, I usually just spend all my off time lying in bed at the hotel. I overdid it and ran out of spoons, had to stop 6 times and sit on the sidewalk until I could get up and walk another few feet. It was exhausting and stressful and embarrassing.
I know there are lots of folks here who get it. ❤️
Thank you so much for the support Eileen. I’ve had some nasty judgement since sharing it from people in my life who either didn’t read the whole thing - or read it and decided to judge anyways. Completely missing the point of the piece.
I’m so sorry about your rough walk - I’ve been there! I once had to sit down in our underground PATH (not sure if you’ve ever been to Toronto but it’s a huge underground network of paths and shops and businesses connecting all of the downtown) and a security guard came and said ‘you can’t sit here.’ I guess they’re tasked with deterring panhandlers and homeless people (who I think should be allowed to sit down there because Canadian elements are HARSH) but I told him “either you let me sit here or you’re going to be calling 911 - you can choose what’s more disruptive to the customers.’
He backed off after that!
Thank you for sharing. I had no idea there was any such thing
Thank you for sharing this. I'm sorry you struggle with all that. Having been all but bedbound from severe fatigue and chronic pain for several years (most of high school), I can empathize with at least some of it.
I remember back in my 20s I memorized routes across the kitchen. All the places I could hold on for support, and where I needed to push off with my arms so I could stumble the few steps in the correct direction to grab the next improvised handhold. But it still took several years before it even occurred to me that I should use a cane. That it was okay to show my disability that way. That people wouldn't see an apparently healthy kid (outwardly, I look the same now in my 40s as I did at 17) and think I was faking it. I needed the extra support and balance, but I tried so hard to hide it. So stupid.
And, yeah, I have a habit of hiding my pain. My nerves are hypersensitive, so I'm always in pain. Constant widespread low level pain that I usually relegate into the background noise of my life. (That includes tinnitus, and I once explained part of what I deal with as full-body tinnitus.) But also deep aches and sharp spikes and pins and needles, all coming and going randomly. I never know where the next one will be, how intense it will be, how long it will last. There's no point in showing that to people. It doesn't help me. It makes the empathetic ones hurt and others look at me with unwanted pity. So I smile. I sit quietly. I don't scream. I don't wince. I keep my breathing steady. I try to walk normally. I endure.
I remember I was at the Mayo Clinic for an overhaul and the neurologist asked me to walk down the hall without my cane. I figured it was important to let him see, so I stopped holding back. He stopped me. "Why are you walking like that? You're sending out pain signals. You should be careful about that." It was so strange. The Clinic was so welcoming and supportive. They live up to their motto of "patients first." They listen. They care. They work with the patient as a partner instead of handing down decrees. And here he was telling me in the middle of an exam that I should work harder on hiding my pain so as not to inflict it on others. All because for once, for the sake of the exam, I let my guard down and stopped spending spoons on hiding my pain so that he could see the truth.
I’m so sorry you experienced that. It’s awful when even a doctor tells us to hide our pain. I don’t understand why as a society we are so against witnessing pain, suffering and death.
Today was the anniversary of my Mom’s passing - and she died when I was a teenager. I was with her through nine months of terminal pancreatic cancer. It wasn’t pretty - but I never wanted her to hide her pain. I didn’t want to look away. I consider that time with her as a gift.