I have begun to accept the label 'disabled' for myself in the last year, it was scary to approach, for many of the reasons you mention. Also I think for other reasons-- like it was a curse that if I accepted this word, I would bring down on myself and ruin my chances of "miraculous overnight recovery." A conversation with a knowledgeable disabled friend who went over what the qualifications are for disability from an employment standpoint was my turning point. She was like, you meet every one of these characteristics. Anyway, kinda like turning a big decade birthday, once you stop dreading the approach and get on with it, you're ok with it and glad the resistance is over
Ah yes, I remember feeling the same way. I don’t know if you have a dynamic disability or not, where the possibility of recovery is always there, but I definitely remember feeling like I was shooting myself in the foot by calling myself disabled. Even now, I still wonder if I’ll ever recover enough to shed to label and what that will feel like.
I’m so sorry to hear you are suffering to this extent, for so long AND had to go through all that with disability claim. Thank you so much for sharing your story. I genuinely feel the greatest change will come in the longer term for those of us that do.
It was only when my neurologist said that migraine was the worlds 7th most disabling disease a person can live with I responded “that’s exactly how I feel”.
Turned out, his information was out of date and it was already 2nd. 1st in women and children.
Does anybody ever receive factually correct notes from their neurologist? My letter was littered with errors from beginning to end.
It was only when I saw many hundreds of fellow chronic illness warriors slating those of us in recovery (they can’t have been that ill, their symptoms must have been few) that I realised dismissal is not limited to the medical field, it’s everywhere. For the first time, it made me realise how all those years, I’d dismissed myself. That this exists within us as well as in each other.
So true, the dismissal is everywhere, both in and out. In the US at least, I think there are many well meaning doctors who simply don’t have the time or energy for compassion.
This is inspiring. It might not feel like that from where you are lying down in a dark room, but it is. My 24 year old son has epilepsy. He REFUSES to call himself disabled. It is simply not open for discussion. He struggles to find and keep jobs for various reasons - related learning disabilities, difficulty with social cues, and having his anti-seizure medication turn him into a zombie. being the biggest. He has literally had (rude) people ask him if he is a robot. He thinks it's because he is fast on the register in the store where he works, but it's likely also because he shows very, very, very little emotion or animation. because of the emotional flattening noted above. Anyway, it gives me hope - not that he'll be 'disabled enough' for some government/insurance character to 'believe' it, but that someday he might self-recognize that everyone needs support at some point in their lives. Thank you for this!
Wow, you did make me feel inspiring! Thank you, even breathing a little hope into the situation with your son makes the writing worth it! Don’t give up!
You are an inspiration in courage. I’m so glad you’re working with a lawyer. You paid into an insurance that should cover you in the event of…
We were on line to board a plane recently and a gal next to us quipped about an early-boarding passenger, “She looks fine. Why is she boarding early?” I gently reprimanded her, “We have no idea what’s going on inside her body.”
The worst part is that I'm no longer working with a lawyer! Her contract expired just in time for Olga to come knocking...
Thanks for advocating for people with invisible disabilities! People tell me "You look great" all the time, and I'm just like...well, that's not how I feel! Haha.
Fabulous essay, Natalie. It was really interesting to read about you coming to terms with this new identity and advocating for yourself. I hope that somehow, in a bit of synchronicity, Olga reads this and takes a hard look at her own answer to “What do you do?”
I really appreciate how you approached this. Funny but serious. I can't imagine having to battle it out for something so legit. I'm on day 2 of a lingering migraine that is only muffled by my medication and I can't imagine feeling this way chronically.
Good for you for fighting "the system" and winning!
OOF. I felt all of this. I remember my doctor offering to get me a temporary parking placard when I had CFS. I was shocked. Of course I don't need that! But you just told me you have to rest three times walking from the parking lot to your office. Well yes, but.
Oooohhh I had such a similar experience! “Oh no, don’t turn the lights off. They make my eyes burn in the fires of hell, but I wouldn’t want to inconvenience you.” 😂
I hear and see you loud (not painfully so) and clear. I had been downsized out of a job that saw and respected my limitations, in 2007. After a 2 year search, not finding work to accommodate my chronic pain and migraine requirements, I finally "gave in" and filed for disability with social security. My husband and others had been telling me to for several years, but like you, I didn't feel "disabled" like other people were disabled. After they okayed my disability after i filled in and provided my information I was shocked. My husband asked why I was shocked because I was way overdue in filing. I had someone in "authority" agreeing without question the first time I sent it in that I was disabled. I was shocked I didn't have to battle the system. I am now in the process of filling out a form to show that nothing has changed my status. Still fighting migraines and chronic pain.
I wish you luck on the form! I am in the middle of some forms myself. It sounds like we felt very similarly about calling ourselves disabled! I wonder why. It’s almost as if, for me, I was being ableist against myself.
I've been through (and written about) this process too, as someone living with chronic fatigue, and found your essay really helpful for inviting out the remaining tendrils of imposter syndrome that still need to find the light of day. Thank you!
Thank for reading! I’ve always considered chronic fatigue one of the most disabling of conditions. Not sure if that makes you feel better but your struggle is a serious one!
That's interesting - it is an incredibly frustrating chronic illness to have, but I must admit I think I'd find chronic pain even more challenging. I also was lucky to get disability when I know others struggle a lot more.
I have begun to accept the label 'disabled' for myself in the last year, it was scary to approach, for many of the reasons you mention. Also I think for other reasons-- like it was a curse that if I accepted this word, I would bring down on myself and ruin my chances of "miraculous overnight recovery." A conversation with a knowledgeable disabled friend who went over what the qualifications are for disability from an employment standpoint was my turning point. She was like, you meet every one of these characteristics. Anyway, kinda like turning a big decade birthday, once you stop dreading the approach and get on with it, you're ok with it and glad the resistance is over
Ah yes, I remember feeling the same way. I don’t know if you have a dynamic disability or not, where the possibility of recovery is always there, but I definitely remember feeling like I was shooting myself in the foot by calling myself disabled. Even now, I still wonder if I’ll ever recover enough to shed to label and what that will feel like.
I’m so sorry to hear you are suffering to this extent, for so long AND had to go through all that with disability claim. Thank you so much for sharing your story. I genuinely feel the greatest change will come in the longer term for those of us that do.
It was only when my neurologist said that migraine was the worlds 7th most disabling disease a person can live with I responded “that’s exactly how I feel”.
Turned out, his information was out of date and it was already 2nd. 1st in women and children.
Does anybody ever receive factually correct notes from their neurologist? My letter was littered with errors from beginning to end.
It was only when I saw many hundreds of fellow chronic illness warriors slating those of us in recovery (they can’t have been that ill, their symptoms must have been few) that I realised dismissal is not limited to the medical field, it’s everywhere. For the first time, it made me realise how all those years, I’d dismissed myself. That this exists within us as well as in each other.
So true, the dismissal is everywhere, both in and out. In the US at least, I think there are many well meaning doctors who simply don’t have the time or energy for compassion.
This is inspiring. It might not feel like that from where you are lying down in a dark room, but it is. My 24 year old son has epilepsy. He REFUSES to call himself disabled. It is simply not open for discussion. He struggles to find and keep jobs for various reasons - related learning disabilities, difficulty with social cues, and having his anti-seizure medication turn him into a zombie. being the biggest. He has literally had (rude) people ask him if he is a robot. He thinks it's because he is fast on the register in the store where he works, but it's likely also because he shows very, very, very little emotion or animation. because of the emotional flattening noted above. Anyway, it gives me hope - not that he'll be 'disabled enough' for some government/insurance character to 'believe' it, but that someday he might self-recognize that everyone needs support at some point in their lives. Thank you for this!
Wow, you did make me feel inspiring! Thank you, even breathing a little hope into the situation with your son makes the writing worth it! Don’t give up!
You are an inspiration in courage. I’m so glad you’re working with a lawyer. You paid into an insurance that should cover you in the event of…
We were on line to board a plane recently and a gal next to us quipped about an early-boarding passenger, “She looks fine. Why is she boarding early?” I gently reprimanded her, “We have no idea what’s going on inside her body.”
The worst part is that I'm no longer working with a lawyer! Her contract expired just in time for Olga to come knocking...
Thanks for advocating for people with invisible disabilities! People tell me "You look great" all the time, and I'm just like...well, that's not how I feel! Haha.
Fabulous essay, Natalie. It was really interesting to read about you coming to terms with this new identity and advocating for yourself. I hope that somehow, in a bit of synchronicity, Olga reads this and takes a hard look at her own answer to “What do you do?”
Oh man, Olga definitely has some soul searching to do 😂
Oh, and thank you for the shout-out!
I really appreciate how you approached this. Funny but serious. I can't imagine having to battle it out for something so legit. I'm on day 2 of a lingering migraine that is only muffled by my medication and I can't imagine feeling this way chronically.
Good for you for fighting "the system" and winning!
All thanks to my lawyer! She’s the tough one of the two of us.
I'm glad she was willing to fight for you!
OOF. I felt all of this. I remember my doctor offering to get me a temporary parking placard when I had CFS. I was shocked. Of course I don't need that! But you just told me you have to rest three times walking from the parking lot to your office. Well yes, but.
Oooohhh I had such a similar experience! “Oh no, don’t turn the lights off. They make my eyes burn in the fires of hell, but I wouldn’t want to inconvenience you.” 😂
We really can be our own worst enemies, can’t we?
I hear and see you loud (not painfully so) and clear. I had been downsized out of a job that saw and respected my limitations, in 2007. After a 2 year search, not finding work to accommodate my chronic pain and migraine requirements, I finally "gave in" and filed for disability with social security. My husband and others had been telling me to for several years, but like you, I didn't feel "disabled" like other people were disabled. After they okayed my disability after i filled in and provided my information I was shocked. My husband asked why I was shocked because I was way overdue in filing. I had someone in "authority" agreeing without question the first time I sent it in that I was disabled. I was shocked I didn't have to battle the system. I am now in the process of filling out a form to show that nothing has changed my status. Still fighting migraines and chronic pain.
I wish you luck on the form! I am in the middle of some forms myself. It sounds like we felt very similarly about calling ourselves disabled! I wonder why. It’s almost as if, for me, I was being ableist against myself.
Ditto. Google luck with your forms too.
I wonder if “disability” means “lots of paperwork.” I should check the etymology.
I've been through (and written about) this process too, as someone living with chronic fatigue, and found your essay really helpful for inviting out the remaining tendrils of imposter syndrome that still need to find the light of day. Thank you!
Thank for reading! I’ve always considered chronic fatigue one of the most disabling of conditions. Not sure if that makes you feel better but your struggle is a serious one!
That's interesting - it is an incredibly frustrating chronic illness to have, but I must admit I think I'd find chronic pain even more challenging. I also was lucky to get disability when I know others struggle a lot more.
Well I guess we’d better not swap illnesses. We’d both be extra frustrated! Good luck and keep fighting!
Love that! Thank you - you too, Natalie.
Decades ago —as a recent graduate,—I worked for an insurance company in the US. That's the first time I learned how cruel and greedy they are.
😯