When you become chronically ill - you're on your own. No one teaches you how to navigate this new world, how to adapt to your new circumstances or find help. What do you most want to learn?
A sloth would be good! I know zebras are used a lot of EDS but they really can represent MANY chronic illnesses because of the saying ‘when you hear hoofbeats think horses not zebras’. Many of us turned out to be the zebra!
Yes, all of this! I've just posted a short post with a bit about ableism , would love to read your take on it. We really do learn so much more from other chronically ill people than from any medical professional.
I will check it out! An article or a note? Sorry the brain fog is strong tonight.
We really do learn so much from one another - even twenty years ago when I was going through all my post hysterectomy complications - it was an old school message board filled with incredibly kind women who got me through it. All I got from doctors were “take these pills and rest”. Meanwhile I was 24 and just lost my womb… I needed a LOT more support.
I'd love a discussion about how to deal with medical professionals that insist you don't know your own body. Case in point: my liver enzymes have been erratic since my mid-20s when I was diagnosed and treated for an amoebic parasite that had been in my liver for at least a decade. It left scar tissue. Every blood test my enzymes are off the chart, but different from the previous test. Every new doctor I see wants to test my liver and do all sorts of scans. I know exactly where the scar tissue is. How big it is and no one, no one ever believes that I know what I'm talking about. It's infuriating. I've had this body for 67 years. Had dozens and dozens of scans and blood tests. I have an excel spreadsheet charting my erratic liver enzymes, and copies of all those tests. And still, the answer is alway, "Well, lets just do this scan to see if there are any changes..." There haven't been in the last 30 years. But sure, what the fuck would I know about it...
Ugh I’m infuriated for you!!! But sadly not surprised. I hate that I’m going to ask this… but have you tried going with a man and having him assert that you know your body and are to be listened to?
nope. I shouldn't have to. The really infuriating part for me is I get that response from female medical staff as well. Last doctor I saw told me I had high cholesterol and wanted to put me on statins and I'm trying not to take any more meds (after years and years of taking them for fun, ah, the irony of a sober addict) and I said no, that I'd make some lifestyle and diet changes and if the numbers don't change after 6 months, then we could talk about it. She never responded to me. I made the changes, and brought my cholesterol way, way down. I just need doctors mostly for diagnostics, and options, but I'll make my own decisions.
I completely agree and have been through the same thing with male and female doctors alike. Eventually I started bringing a “man prop”. It’s just a good guy friend who knows nothing about my conditions but who I prep beforehand on how to back me up. The tone and treatment I received changed considerably. Its infuriating.
I’m writing about it to shine light on this issue because I don’t think any of us should be forced to bring a man to our appointments to be taken seriously. That can’t be the answer.
I didn't always agree with Christopher Hitchens, but I do miss him, and I don't not think American politics would've devolved the way it has if he and George Carlin were still around. And I think it's a double whammy being a woman with disability and/or chronic illness. We are hypochondriacs, after all. Right? 🤣🤬 xo
It’s absolutely a double whammy. There’s actually a hospital in my city that have a multi-year, multi-discipline study going called ‘The Health Gap.’ The whole focus is on how women are treated differently in healthcare.
One thing I love about it is that they recognize barriers to care that go above and beyond just the fact that doctors treat us differently. For example - they acknowledge that women are often caring for children or sick family and therefore don’t have as much time to attend hospital appointments. They’ve come up with a virtual program to help AND a childcare centre for when they need to come in person. It’s been inspiring to see!
Ah Carlin and Hitchens. Two guys I always loved to listen to - even if we didn’t always agree.
Medicine in changing. Just slowly. But I give them a great deal of compassion, because they have been in the wars for the past 4 years…and it shows no signs of slowing now with mpox and the latest strain of bird flu joining the party. xo
Yes this study was in the works even before the pandemic - and I think has great potential to bring about change. You can already see the trickle down effects of it when you’re treated at that hospital. They listen more, I’ve felt more validated and more like a partner in my care. More of that please!
(Links to education on the disease, books that support the journey and include recovery)
💠A note to language (for example that recovery IS possible over stating that it isn’t, that there is hope over leaving patients feeling hopeless - and I have a lot more to say on this but I’ll leave it there for now).
💠Access to support (specifically that meets needs)
I think it’s so important that people come away from any guide feeling empowered and hopeful. That’s NOT how we feel when we leave the doctor’s office. I want people to realize they have a lot of power and control over how they move forward and adapt to their illness - and what they choose to do will determine their quality of life (arguably far more than anything a doctor will do).
All of it, every thing and any thing. It will resonate and feeling be belong to a tribe, that other people get it is so incredibly important.
Thank you Tamsin! I feel like we should have a mascot … perhaps one of your knit creatures as I love them so much.
Hmm, a sloth would seem appropriate I feel? Any other suggestions? I think I saw a sloth pattern somewhere. 🤔
A sloth would be good! I know zebras are used a lot of EDS but they really can represent MANY chronic illnesses because of the saying ‘when you hear hoofbeats think horses not zebras’. Many of us turned out to be the zebra!
I’m happy to try anything, almost. Let’s see if there are any other suggestions.
Yes, all of this! I've just posted a short post with a bit about ableism , would love to read your take on it. We really do learn so much more from other chronically ill people than from any medical professional.
I will check it out! An article or a note? Sorry the brain fog is strong tonight.
We really do learn so much from one another - even twenty years ago when I was going through all my post hysterectomy complications - it was an old school message board filled with incredibly kind women who got me through it. All I got from doctors were “take these pills and rest”. Meanwhile I was 24 and just lost my womb… I needed a LOT more support.
Article
Oh yes, message boards, I remember those, yes so much more support needed than medical professionals give!
I'd love a discussion about how to deal with medical professionals that insist you don't know your own body. Case in point: my liver enzymes have been erratic since my mid-20s when I was diagnosed and treated for an amoebic parasite that had been in my liver for at least a decade. It left scar tissue. Every blood test my enzymes are off the chart, but different from the previous test. Every new doctor I see wants to test my liver and do all sorts of scans. I know exactly where the scar tissue is. How big it is and no one, no one ever believes that I know what I'm talking about. It's infuriating. I've had this body for 67 years. Had dozens and dozens of scans and blood tests. I have an excel spreadsheet charting my erratic liver enzymes, and copies of all those tests. And still, the answer is alway, "Well, lets just do this scan to see if there are any changes..." There haven't been in the last 30 years. But sure, what the fuck would I know about it...
Ugh I’m infuriated for you!!! But sadly not surprised. I hate that I’m going to ask this… but have you tried going with a man and having him assert that you know your body and are to be listened to?
nope. I shouldn't have to. The really infuriating part for me is I get that response from female medical staff as well. Last doctor I saw told me I had high cholesterol and wanted to put me on statins and I'm trying not to take any more meds (after years and years of taking them for fun, ah, the irony of a sober addict) and I said no, that I'd make some lifestyle and diet changes and if the numbers don't change after 6 months, then we could talk about it. She never responded to me. I made the changes, and brought my cholesterol way, way down. I just need doctors mostly for diagnostics, and options, but I'll make my own decisions.
I completely agree and have been through the same thing with male and female doctors alike. Eventually I started bringing a “man prop”. It’s just a good guy friend who knows nothing about my conditions but who I prep beforehand on how to back me up. The tone and treatment I received changed considerably. Its infuriating.
I’m writing about it to shine light on this issue because I don’t think any of us should be forced to bring a man to our appointments to be taken seriously. That can’t be the answer.
Thanks very much for this insightful post - Bob
Thank you for reading!
I didn't always agree with Christopher Hitchens, but I do miss him, and I don't not think American politics would've devolved the way it has if he and George Carlin were still around. And I think it's a double whammy being a woman with disability and/or chronic illness. We are hypochondriacs, after all. Right? 🤣🤬 xo
It’s absolutely a double whammy. There’s actually a hospital in my city that have a multi-year, multi-discipline study going called ‘The Health Gap.’ The whole focus is on how women are treated differently in healthcare.
One thing I love about it is that they recognize barriers to care that go above and beyond just the fact that doctors treat us differently. For example - they acknowledge that women are often caring for children or sick family and therefore don’t have as much time to attend hospital appointments. They’ve come up with a virtual program to help AND a childcare centre for when they need to come in person. It’s been inspiring to see!
Ah Carlin and Hitchens. Two guys I always loved to listen to - even if we didn’t always agree.
Medicine in changing. Just slowly. But I give them a great deal of compassion, because they have been in the wars for the past 4 years…and it shows no signs of slowing now with mpox and the latest strain of bird flu joining the party. xo
Yes this study was in the works even before the pandemic - and I think has great potential to bring about change. You can already see the trickle down effects of it when you’re treated at that hospital. They listen more, I’ve felt more validated and more like a partner in my care. More of that please!
Great idea!
I’d like to suggest
💠Empowering resources
(Links to education on the disease, books that support the journey and include recovery)
💠A note to language (for example that recovery IS possible over stating that it isn’t, that there is hope over leaving patients feeling hopeless - and I have a lot more to say on this but I’ll leave it there for now).
💠Access to support (specifically that meets needs)
💠Mental health insight and practices
Think that’ll do for now 🙂
Love all these suggestions Amber!
I think it’s so important that people come away from any guide feeling empowered and hopeful. That’s NOT how we feel when we leave the doctor’s office. I want people to realize they have a lot of power and control over how they move forward and adapt to their illness - and what they choose to do will determine their quality of life (arguably far more than anything a doctor will do).