This was excellent- thank you so much! I’m going to link it in my own newsletter.
In my case, I had the CPET, which helped me finally overturn STD denials (and then I got LTD). LTD didn’t care that I hadn’t already applied for SSDI, but of course they made me apply after. They provided me with an attorney (who I’m convinced works for The Hartford and not on my behalf - they didn’t even send my CPET report in with the first SSDI application 🤦🏼♀️. I’ve since addressed that colossal fucking error).
Since I’m now in the first appeal due to that mistake, I have my second SSDI medical appointment in a few weeks and they tacked on a psychologist appointment a few weeks after that (why, I don’t know. Maybe because somewhere in my records it says I take lorazepam once a year 🙄). I have considered having my husband push me in the mobility chair I bought, but I’m also sort of done with “performing disability” for these assholes. I can walk fine; I’ll just rest when I get home. Thoughts on the chair?
So, here’s my hot take on the chair. Use the chair. Most of us can walk fine. We can’t do so safely. When the repercussion of not using a mobility aid, not pacing, or not paying attention to your heart rate is symptom exacerbation, and potential deterioration, you actually can’t walk fine.
If you experience PEM, there’s nothing performative about this. If you’re applying for disability, then you are disabled, and using mobility aids to avoid disease progression isn’t performative. It’s not normal to require aids and pacing to avoid disease progression. Use the chair. Explain the neuroimmune consequences of exertion to the doctor and get the benefits that you’ve earned! ❤️
It’s a chair that I sit in that can only be pushed by another person. Not by me. And it’s not motorized. $150 on Amazon. I haven’t used it much, but it came in handy when I did.
And sadly, it made no difference to my last round of disability doc appointments. They denied me yet again. My administrative hearing is in May, and that’s by phone.
I feel like I got disability benefits because I got a lawyer on appeal. They usually deny it once just to see how serious you are about it. Ugh. Another thing that helped me was getting a Functional Capacity Analysis which showed that my limiting factor was my heartrate. I wish all my fellow MEeps success in getting disability benefits. We deserve them.
Excellent information. I followed the Sleepy Girl’s guide, as I transitioned from full time work (Head Start child care director) to FMLA and STD. Workplace doesn’t like sick people who ask for accommodations. And I knew enough to NOT QUIT. They actually terminated me, via email, stating “We assume you resigned as you did not return to work…”. I immediately wrote back, “I did not resign”. Thankfully, I had planned ahead— my doctor immediately filled out LTD forms needed and I filed with the attorney general’s office. Wrongful termination. That is another story. But, I played that game, while horribly sick and traumatized. LTD was approved. The Standard sent me a lawyer. He did as little as possible and told me I’d be denied. I pursued every referral, every diagnosis and fought back (via writing in the portals) when specialists tried to dismiss me. Mental Status exam and Ot eval. Now on SSDI, have received Ltd since termination well over a year ago. They are reviewing me again now. This crap is awful. Makes us sick. And to think, of all the under resourced folks (ie no career with benefits to start, no lawyer, no insurance, no computer literacy, etc) who are sick with Long COVID. I am losing my mind with outrage. Thanks for your writing!
Hi Amy, Thank you for your Health Rising essay -- your experience somewhat mirrors my own. If you don't mind sharing, I am interested in how the LTD / SSDI process worked out with Hartford and their attorney, as I am just beginning that part of my personal saga and deciding whether to use Hartford's suggested SSDI attorney.
My contact info is "vivian _ morris [at] hotmail [dot] com" Thank you!
Thank you for the very informative article with resources. I was just denied SSDI on round one and I have an attorney. I’m concerned that my PCP didn’t comment on my very positive 2 day CPET that I made an appointment with him to discuss & sent to him in advance with the purpose of my visit. At the appointment he suggested a functional capacity exam to which I said that wouldn’t demonstrate my disability and the 2 day CPET is specific for ME/Long Covid. I’m a little freaked that my attorney never mentioned getting letters of support from physicians or close family/friends nor have my husband do a third party functional report. The attorney told me to just assume we’ll get denied again a need to go before a judge. I feel like I’m doing more of the work than they are at this point but I’m scared to switch part way through. My attorney was recommended by one of my physicians, whom I really trust.
This is unbelievably helpful. I think many of us have healthcare providers who don’t recognize what is happening. I was told by 3 doctors that what I was experiencing was “aging”. If I had known what was wrong before I crashed and had to give up, I maybe could have done all of this. I am incredibly amazed and grateful that you were capable of amassing all of this information. I have private disability insurance that I have paid for for 30 years, but I have been using all
my limited capacity to get better rather than applying for disability. Maybe I can still get it.
This is a great compilation of guidance and resources. I feel so fortunate to be successfully on the other side of LTD/SSDI approval, but the process took a toll. I always tell people to try not to let it make you any sicker. Just do the best that your disabled self can do. And make a note on any forms or narratives that you needed help completing them (if that’s the case). I would also always lead doctors appts by saying “I am still x percentage impaired physically and x percentage cognitively.” Catch them when they are still listening and more likely to be writing things down. And hand them a typed summary/bullets of your current functional limitations so they include it in your file.
(You may have said these things - I wasn’t able to read it all yet.)
This was excellent- thank you so much! I’m going to link it in my own newsletter.
In my case, I had the CPET, which helped me finally overturn STD denials (and then I got LTD). LTD didn’t care that I hadn’t already applied for SSDI, but of course they made me apply after. They provided me with an attorney (who I’m convinced works for The Hartford and not on my behalf - they didn’t even send my CPET report in with the first SSDI application 🤦🏼♀️. I’ve since addressed that colossal fucking error).
Since I’m now in the first appeal due to that mistake, I have my second SSDI medical appointment in a few weeks and they tacked on a psychologist appointment a few weeks after that (why, I don’t know. Maybe because somewhere in my records it says I take lorazepam once a year 🙄). I have considered having my husband push me in the mobility chair I bought, but I’m also sort of done with “performing disability” for these assholes. I can walk fine; I’ll just rest when I get home. Thoughts on the chair?
If anyone wants to read more about a CPET path to disability, check out my piece that was in Health Rising earlier this year: https://www.healthrising.org/blog/2023/03/02/my-long-covid-disability-journey/
So, here’s my hot take on the chair. Use the chair. Most of us can walk fine. We can’t do so safely. When the repercussion of not using a mobility aid, not pacing, or not paying attention to your heart rate is symptom exacerbation, and potential deterioration, you actually can’t walk fine.
If you experience PEM, there’s nothing performative about this. If you’re applying for disability, then you are disabled, and using mobility aids to avoid disease progression isn’t performative. It’s not normal to require aids and pacing to avoid disease progression. Use the chair. Explain the neuroimmune consequences of exertion to the doctor and get the benefits that you’ve earned! ❤️
Thanks for your comment and sharing your link!
Excellent points! I will use the chair. Thank you 🙏🏻
Amy- when you say mobility chair, are you referring to a motorized scooter or wheelchair?
It’s a chair that I sit in that can only be pushed by another person. Not by me. And it’s not motorized. $150 on Amazon. I haven’t used it much, but it came in handy when I did.
And sadly, it made no difference to my last round of disability doc appointments. They denied me yet again. My administrative hearing is in May, and that’s by phone.
I feel like I got disability benefits because I got a lawyer on appeal. They usually deny it once just to see how serious you are about it. Ugh. Another thing that helped me was getting a Functional Capacity Analysis which showed that my limiting factor was my heartrate. I wish all my fellow MEeps success in getting disability benefits. We deserve them.
Excellent information. I followed the Sleepy Girl’s guide, as I transitioned from full time work (Head Start child care director) to FMLA and STD. Workplace doesn’t like sick people who ask for accommodations. And I knew enough to NOT QUIT. They actually terminated me, via email, stating “We assume you resigned as you did not return to work…”. I immediately wrote back, “I did not resign”. Thankfully, I had planned ahead— my doctor immediately filled out LTD forms needed and I filed with the attorney general’s office. Wrongful termination. That is another story. But, I played that game, while horribly sick and traumatized. LTD was approved. The Standard sent me a lawyer. He did as little as possible and told me I’d be denied. I pursued every referral, every diagnosis and fought back (via writing in the portals) when specialists tried to dismiss me. Mental Status exam and Ot eval. Now on SSDI, have received Ltd since termination well over a year ago. They are reviewing me again now. This crap is awful. Makes us sick. And to think, of all the under resourced folks (ie no career with benefits to start, no lawyer, no insurance, no computer literacy, etc) who are sick with Long COVID. I am losing my mind with outrage. Thanks for your writing!
Hi Amy, Thank you for your Health Rising essay -- your experience somewhat mirrors my own. If you don't mind sharing, I am interested in how the LTD / SSDI process worked out with Hartford and their attorney, as I am just beginning that part of my personal saga and deciding whether to use Hartford's suggested SSDI attorney.
My contact info is "vivian _ morris [at] hotmail [dot] com" Thank you!
Thank you for the very informative article with resources. I was just denied SSDI on round one and I have an attorney. I’m concerned that my PCP didn’t comment on my very positive 2 day CPET that I made an appointment with him to discuss & sent to him in advance with the purpose of my visit. At the appointment he suggested a functional capacity exam to which I said that wouldn’t demonstrate my disability and the 2 day CPET is specific for ME/Long Covid. I’m a little freaked that my attorney never mentioned getting letters of support from physicians or close family/friends nor have my husband do a third party functional report. The attorney told me to just assume we’ll get denied again a need to go before a judge. I feel like I’m doing more of the work than they are at this point but I’m scared to switch part way through. My attorney was recommended by one of my physicians, whom I really trust.
This is unbelievably helpful. I think many of us have healthcare providers who don’t recognize what is happening. I was told by 3 doctors that what I was experiencing was “aging”. If I had known what was wrong before I crashed and had to give up, I maybe could have done all of this. I am incredibly amazed and grateful that you were capable of amassing all of this information. I have private disability insurance that I have paid for for 30 years, but I have been using all
my limited capacity to get better rather than applying for disability. Maybe I can still get it.
This is a great compilation of guidance and resources. I feel so fortunate to be successfully on the other side of LTD/SSDI approval, but the process took a toll. I always tell people to try not to let it make you any sicker. Just do the best that your disabled self can do. And make a note on any forms or narratives that you needed help completing them (if that’s the case). I would also always lead doctors appts by saying “I am still x percentage impaired physically and x percentage cognitively.” Catch them when they are still listening and more likely to be writing things down. And hand them a typed summary/bullets of your current functional limitations so they include it in your file.
(You may have said these things - I wasn’t able to read it all yet.)
Thanks for creating this resource. I have shared to my public group on Facebook. (ME-ICC & other marginalized diseases.)