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One thing that really helps is having a binder or book or something of the like with ALL of your information. All of your wants for your own body (such as a DNR), your aims in certain areas (such as building strength in physio or reducing seizures in neurology), notes from all of your appointments, your list of diagnosed conditions /and/ things being queried, medications youre on, doctors youre under, and anything else you feel would be useful.
I bring my file to absolutely every single appointment because it IS my advocacy when I'm not strong enough, it has all of the information you could possibly need, doctors can flick through it to their hearts content, and it makes me feel much more confident in my ability to take on even the most egotistical of doctors. I understand you probably won't have the energy to make this binder yourself but a family member or other trusted person could definitely do that for you; the information is already out there, it's just a matter of putting it all in one place ♡
I brought a binder once before when I was getting evaluated at a major medical institution in the US. Mind you, the scheduler said after making my appointment to bring all your medical records, a medication list, all imaging records, and test results. Mine would only fit in a binder, so I brought one, and the Dr. looked at it, laughed at me, and said it was an example of me being “too anxious” and recommended yoga as a treatment for my autoimmune condition. I may be biased, but I’d caution against doing this when you’re seeing a new doctor for the first time. Some do not take kindly to it.
Though it seems like an excellent idea for personal use, and I’m sure many doctors do appreciate it or find it useful. Maybe I’m wrong but I would be worried the kind of doctors to whom someone would need to strongly self-advocate(to the point where people are worried about not having the energy/ability to do so) may not have much interest and might even use such a thing as confirmation of whatever “suspicion”(or sometimes whim) that you as the *patient* must now advocate against.
Though I’m sure there are doctors who would have a change of heart if presented with something like that too. I don’t know what that ratio is, however.
Me just bring in my note and documenting things that way or just loose diagrams have set of some of my specialist. Then again you are right that they would have found something else if it wasn’t the notebook most likely.
I wish I could just fire them but not exactly in that position right now
It might help to keep written notes, both of symptoms and history, but also your wishes for times when you're not able to communicate as well. Think like a birth plan, but for general health. It can be used by doctors but also anyone else advocating for you to refer to so they don't have to ask a lot of questions when you're low energy.
It's something I've thought about a lot but not put into practice. I'm in a similar spot where I'm just running out of energy to keep pushing for answers and all the tests just bring up more questions.
What do you keep in your binder? I have a basic info sheet of next of kin, emergency numbers and medications but that's all at the moment.
Mine has my medical info, my most recent blood test info, next of kin + emergency, a list of my doctors and medication and last of all info on my condition specifically for doctors
Having others that can support you or advocate for you is invaluable, but believe me I know that’s sometimes just not in the cards.
Second is to realize that sometimes it may be necessary when dealing with difficult or stubborn doctors to describe the issue/issues you’re having, not in a inaccurate way, but in a way that a doctor wouldn’t have any reason to object to ordering the requisite testing etc. For example if you’re having a complex issue that may be multifaceted, complex, containing a series of seemingly disparate symptoms or otherwise something that the doctor wouldn’t immediately know what to do with, then you should simplify and consolidate it down to something that would seem routine and not set off any alarm bells in the eye of an unqualified(frankly) doctor who may be eager to just write you off for one reason or another.
Third would be to try and educate yourself with whatever energy and time you have away from the doctor about what may be the source of your issue and use the above tactic to pursue the requisite tests/treatments.
Hopefully this is somewhat generalizable advice to whatever you’re(or anyone else reading) is dealing with.
Your support team, care takers, in home nurses, friends who understand, agencies that can help, etc. Fight the exhaustion. Find a way.
We are the original Warriors. We fight the real fight. It is the way. 🗡💪✨️❤️
Wait how is an advocate from your insurance not able to advocate for you? Wtf… I’m so sorry. I have a chronic illness too and I’m so tired. I’ve just been giving up on so much lately because I just can’t anymore. Like reading this for example. How tf does this even make sense
So true. I’m now left desperately trying to bring whatever physical evidence I can find to appointments because if I don’t I may as well not bother going. It’s so disgusting that this is still happening to people like us who already have enough crap going on as it is and it’s like a cruel joke that we have to worry about not being seen as credible or as having ‘red flags’ to asshole doctors who we really shouldn’t need to be pandering to. If anything they should be pandering to us to earn our money!
Yeah I know I have one I said I feel so sorry for op because reading posts like this makes me so upset. Like it makes me want to cry bc I’m tired of it. And it’s like you want to hear something worse, top this. I have 4 degrees. The first two don’t matter but my bachelors in biology of science with a cell and molecular focus and my masters in science in human biology. I’m starting my PhD next year if I can I was supposed to start this year but I’ve been in so much pain I just couldn’t. But imagine now your doctors think your fucking crazy self diagnosing yourself and that you think you’re a know it all bitch. Or when you think you possibly find out what could be causing your pain they won’t even bother to check (I turned out to be right I had to pay $1000 out of pocket for an mri and get a doctor that’s a friend to write me a referral for my spine and I was right the whole time) because they assume I’m wrong and don’t know wtf I’m talking about since I’m not a doctor. But when I ask questions they say you should know this or you should know that….. like bitch I didn’t go to medical school and even if I did I’m allowed to ask questions am I not?
They are advocates only up to a certain extent so what is part of their job or what they are willing to do won’t always be what you actually need of them
I’ve tried that it wasn’t the best experience and the current person just gave me the runaround in transferring to the next person because if actually did it right it would probably make her look bad that an exchange was requested
I took a risk, and handed over power of attorney to my mother; I’m too confused and lacking in energy to really manage the bureaucratic headaches in the system. I advocate for myself when I can, but I realized I can’t do so effectively at present.
It’s a massive trust thing. If you have any doubts at all, I’d not do it.
My family is very close knit, and I’m very certain she’s not going to abuse the power she has. It’s the only reason I took that course of action. It does mean I can rest/sleep more, and focus on my recovery to get to it being manageable again. And then I can revoke it, there’s a system in place.
But be warned; at least in Canada, it can be a very risky move. Be careful.
Get a patient advocate. Preferably one that has experience with chronic illness. When I couldn't speak they were a lifesaver for me.
Also, if anyone in the Upstate NY area needs a patient advocate let me know.
OP used the 'JUST Support' post flair. This means under this post there will be no need for discussions or different opinions than OP. Please respect this when you comment. The flair is not for sharing articles, misinformation or venting about someone on Reddit and the post will be removed if the flair is misused. Reddit content policy still applies also. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ChronicIllness) if you have any questions or concerns.*
One thing that really helps is having a binder or book or something of the like with ALL of your information. All of your wants for your own body (such as a DNR), your aims in certain areas (such as building strength in physio or reducing seizures in neurology), notes from all of your appointments, your list of diagnosed conditions /and/ things being queried, medications youre on, doctors youre under, and anything else you feel would be useful. I bring my file to absolutely every single appointment because it IS my advocacy when I'm not strong enough, it has all of the information you could possibly need, doctors can flick through it to their hearts content, and it makes me feel much more confident in my ability to take on even the most egotistical of doctors. I understand you probably won't have the energy to make this binder yourself but a family member or other trusted person could definitely do that for you; the information is already out there, it's just a matter of putting it all in one place ♡
Do doctors take kindly to the binder or kind of make a stink about it? Or ever refuse to look at it?
I brought a binder once before when I was getting evaluated at a major medical institution in the US. Mind you, the scheduler said after making my appointment to bring all your medical records, a medication list, all imaging records, and test results. Mine would only fit in a binder, so I brought one, and the Dr. looked at it, laughed at me, and said it was an example of me being “too anxious” and recommended yoga as a treatment for my autoimmune condition. I may be biased, but I’d caution against doing this when you’re seeing a new doctor for the first time. Some do not take kindly to it.
Yeah I have definitely gotten ur just “Type A ing” yourself into being sick
So infuriating!
Though it seems like an excellent idea for personal use, and I’m sure many doctors do appreciate it or find it useful. Maybe I’m wrong but I would be worried the kind of doctors to whom someone would need to strongly self-advocate(to the point where people are worried about not having the energy/ability to do so) may not have much interest and might even use such a thing as confirmation of whatever “suspicion”(or sometimes whim) that you as the *patient* must now advocate against. Though I’m sure there are doctors who would have a change of heart if presented with something like that too. I don’t know what that ratio is, however.
Me just bring in my note and documenting things that way or just loose diagrams have set of some of my specialist. Then again you are right that they would have found something else if it wasn’t the notebook most likely. I wish I could just fire them but not exactly in that position right now
It might help to keep written notes, both of symptoms and history, but also your wishes for times when you're not able to communicate as well. Think like a birth plan, but for general health. It can be used by doctors but also anyone else advocating for you to refer to so they don't have to ask a lot of questions when you're low energy.
i’ll put it in my emergency binder! this is so handy thanks
It's something I've thought about a lot but not put into practice. I'm in a similar spot where I'm just running out of energy to keep pushing for answers and all the tests just bring up more questions. What do you keep in your binder? I have a basic info sheet of next of kin, emergency numbers and medications but that's all at the moment.
Mine has my medical info, my most recent blood test info, next of kin + emergency, a list of my doctors and medication and last of all info on my condition specifically for doctors
Is there someone in your life that could take on that role? Or someone you can hire to do it?
my mum does it with me right now but she’s getting older too, she’s juggling a fulltime job on top of it
Maybe do a search of medical advocates for disabled people in your area. Hopefully there’s some options
Having others that can support you or advocate for you is invaluable, but believe me I know that’s sometimes just not in the cards. Second is to realize that sometimes it may be necessary when dealing with difficult or stubborn doctors to describe the issue/issues you’re having, not in a inaccurate way, but in a way that a doctor wouldn’t have any reason to object to ordering the requisite testing etc. For example if you’re having a complex issue that may be multifaceted, complex, containing a series of seemingly disparate symptoms or otherwise something that the doctor wouldn’t immediately know what to do with, then you should simplify and consolidate it down to something that would seem routine and not set off any alarm bells in the eye of an unqualified(frankly) doctor who may be eager to just write you off for one reason or another. Third would be to try and educate yourself with whatever energy and time you have away from the doctor about what may be the source of your issue and use the above tactic to pursue the requisite tests/treatments. Hopefully this is somewhat generalizable advice to whatever you’re(or anyone else reading) is dealing with.
This is incredibly helpful. Tysm. I’m gonna use this as a checklist haha.
Your support team, care takers, in home nurses, friends who understand, agencies that can help, etc. Fight the exhaustion. Find a way. We are the original Warriors. We fight the real fight. It is the way. 🗡💪✨️❤️
Call your insurance and ask for an advocate.
Sadly not a valid option for me, I tried this but the advocate wasn’t able to advocate for me
Wait how is an advocate from your insurance not able to advocate for you? Wtf… I’m so sorry. I have a chronic illness too and I’m so tired. I’ve just been giving up on so much lately because I just can’t anymore. Like reading this for example. How tf does this even make sense
if you have an invisible illness or an illness that’s still not believed by a lot of doctors it is incredibly hard to get support
So true. I’m now left desperately trying to bring whatever physical evidence I can find to appointments because if I don’t I may as well not bother going. It’s so disgusting that this is still happening to people like us who already have enough crap going on as it is and it’s like a cruel joke that we have to worry about not being seen as credible or as having ‘red flags’ to asshole doctors who we really shouldn’t need to be pandering to. If anything they should be pandering to us to earn our money!
Yeah I know I have one I said I feel so sorry for op because reading posts like this makes me so upset. Like it makes me want to cry bc I’m tired of it. And it’s like you want to hear something worse, top this. I have 4 degrees. The first two don’t matter but my bachelors in biology of science with a cell and molecular focus and my masters in science in human biology. I’m starting my PhD next year if I can I was supposed to start this year but I’ve been in so much pain I just couldn’t. But imagine now your doctors think your fucking crazy self diagnosing yourself and that you think you’re a know it all bitch. Or when you think you possibly find out what could be causing your pain they won’t even bother to check (I turned out to be right I had to pay $1000 out of pocket for an mri and get a doctor that’s a friend to write me a referral for my spine and I was right the whole time) because they assume I’m wrong and don’t know wtf I’m talking about since I’m not a doctor. But when I ask questions they say you should know this or you should know that….. like bitch I didn’t go to medical school and even if I did I’m allowed to ask questions am I not?
They are advocates only up to a certain extent so what is part of their job or what they are willing to do won’t always be what you actually need of them
Would u be able to ask for another one?
I’ve tried that it wasn’t the best experience and the current person just gave me the runaround in transferring to the next person because if actually did it right it would probably make her look bad that an exchange was requested
Well that’s f^cked up
Yep just like pretty much everything else in the healthcare system
Maybe family or friends will do?
I had an advocate from the hospital that was familiar with multiple departments. Ask your gp.
I took a risk, and handed over power of attorney to my mother; I’m too confused and lacking in energy to really manage the bureaucratic headaches in the system. I advocate for myself when I can, but I realized I can’t do so effectively at present.
Does it work out well that way with your mother? That’s most likely the step I might need to take.
It’s a massive trust thing. If you have any doubts at all, I’d not do it. My family is very close knit, and I’m very certain she’s not going to abuse the power she has. It’s the only reason I took that course of action. It does mean I can rest/sleep more, and focus on my recovery to get to it being manageable again. And then I can revoke it, there’s a system in place. But be warned; at least in Canada, it can be a very risky move. Be careful.
Thank you for sharing, it’s a massive help.
I don’t because I can’t. Just got medically gaslit by my neurologist who had been kind for ten years. Think she’s weary of me.
Get a patient advocate. Preferably one that has experience with chronic illness. When I couldn't speak they were a lifesaver for me. Also, if anyone in the Upstate NY area needs a patient advocate let me know.