Thank you so much for this. I'm a disabled librarian and writer; though I've had cerebral palsy for my whole life, it's taken a long time to be capable of living with it instead of fighting against it. I'm a lot more content now, but I have moments of being really emotional and grieving what could've been. We need more people who are willing to share their realities of being disabled.
Great interview, Natasha. I really was struck by your line about how health should not be viewed through a binary lens, and that's so true. I have a very treatable chronic illness, but remember when I was first diagnosed (after a fortunate five decades of 'healthy'), I felt like I had irrevocably fallen off on the wrong side of that divide. Thank you!
Never hit subscribe quicker. My chronic illness is mild compared to what a lot of people go through, but it still disrupts my life in significant ways. I find myself vacillating between trying to bluff my way through a "normal" lifestyle (which doesn't work) and opening up to my colleagues about my limitations and asking them to take them seriously (which they don't).
Thanks for sharing your story. I do wish you well in your fight to live a life that brings you some enjoyment and meaning amidst your pain. As an (non COVID related) anosmic for the second time in 8 years, I must say that the UK offers much more in the way of support than here in the USA.
Thank you Natasha! I also have written some on Chronic illness but not all of my posts are on Substack yet. I have chronic illness as well so I definitely understand how difficult it is when people don’t understand the invisible illness that we live with constantly. It doesn’t tend to bother me until someone makes a comment that is condescending. That hurts! I also have to pace myself. I am taking more vitamins and just try hard to not compare myself to what other people are able to do. They aren’t in the same situation that those of us with chronic illness are in.
Medication side effects people also don’t understand.
Very interesting. As someone who suffers from chronic and pretty bad insomnia (not necessarily the same thing I know), I identify a great deal with how to incorporate this fact of my life into my day to day existence. Thanks for sharing your story.
Thankyou Substack for this recommendation, and hi Natasha. I have just started publishing some of my writings on substack, on very similar themes, from a similar perspective, https://garysharpe.substack.com/p/lessons-learned-in-the-crucible-of - I am also from the UK! As well as looking forward to reading your content and seeing where we have come to similar or different conclusions, I will also look to your established substack for best practice.
Hi Natasha…I really like your approach and what you are trying to do with your newsletter – I believe the majority of us are (or soon will be) living with some kind of chronic illness. Some might be manageable while others require much more maintenance. As for me, I’ve been living well and happily with MS since 2009 – it’s been a challenge with many upsides.
What strikes me (and appeals to me) is the space between acceptance, what the medical experts say and the day-to-day management of the illness. I find the constant balancing act is both frightening and strangely exhilarating. Frightening because there’s always that small voice in the head whispering what ifs, but also exhilarating because the roller coaster ride has just as many ups as downs. I’ve found chronic illnesses often expose weaknesses and feast on self-confidence…but at the same time, a chronic illness eventually makes people stronger and turns them into a better person.
I’m looking forward to following your story a bit closer…
Natasha, this sounds really great! Sometimes we don't really know or understand what sort of illnesses someone might be dealing with, and you are educating people about that. It is great that you can write and that everyone is understanding if you can't sometimes. Guess that is how Substackers roll! Keep up the great work!
Very insightful interview. Thank you. I totally relate to people seeing me as healthy and fine while walking slower than a snail due to chronic illness. Humour helps :) xo
"I’m trying to learn a different way of being creative, one that enables me to be more mindful of taking breaks and not pushing myself too far. It’s … a work in progress."
Good for you. Keep up the good work writing and progressing health wise.
Thank you so much for sharing this. I am writing my newsletter about Disability Rights. I developed asthma as a result of being exposed o second-hand tobacco smoke in the work place. I am sharing my story and reaching out to others who suffer from asthma, chronic bronchitis, COPD and chemical sensitivity as President and Founder of Arizonans for Non-Smokers' Rights.
Thank you so much for the feature! I've loved being on Substack. Happy to answer any questions if people have them :)
Thank you so much for this. I'm a disabled librarian and writer; though I've had cerebral palsy for my whole life, it's taken a long time to be capable of living with it instead of fighting against it. I'm a lot more content now, but I have moments of being really emotional and grieving what could've been. We need more people who are willing to share their realities of being disabled.
Great interview, Natasha. I really was struck by your line about how health should not be viewed through a binary lens, and that's so true. I have a very treatable chronic illness, but remember when I was first diagnosed (after a fortunate five decades of 'healthy'), I felt like I had irrevocably fallen off on the wrong side of that divide. Thank you!
Never hit subscribe quicker. My chronic illness is mild compared to what a lot of people go through, but it still disrupts my life in significant ways. I find myself vacillating between trying to bluff my way through a "normal" lifestyle (which doesn't work) and opening up to my colleagues about my limitations and asking them to take them seriously (which they don't).
How refreshing to hear your courage to confront what many will shy away from, thank you for sharing :)
I love your glam photos and curls. What kind of garden bush is that with blue flowers?
Thanks for sharing your story. I do wish you well in your fight to live a life that brings you some enjoyment and meaning amidst your pain. As an (non COVID related) anosmic for the second time in 8 years, I must say that the UK offers much more in the way of support than here in the USA.
Thank you Natasha! I also have written some on Chronic illness but not all of my posts are on Substack yet. I have chronic illness as well so I definitely understand how difficult it is when people don’t understand the invisible illness that we live with constantly. It doesn’t tend to bother me until someone makes a comment that is condescending. That hurts! I also have to pace myself. I am taking more vitamins and just try hard to not compare myself to what other people are able to do. They aren’t in the same situation that those of us with chronic illness are in.
Medication side effects people also don’t understand.
God bless you as you continue writing! Please subscribe to Heartshare1990@gmail.com.
Very interesting. As someone who suffers from chronic and pretty bad insomnia (not necessarily the same thing I know), I identify a great deal with how to incorporate this fact of my life into my day to day existence. Thanks for sharing your story.
Thankyou Substack for this recommendation, and hi Natasha. I have just started publishing some of my writings on substack, on very similar themes, from a similar perspective, https://garysharpe.substack.com/p/lessons-learned-in-the-crucible-of - I am also from the UK! As well as looking forward to reading your content and seeing where we have come to similar or different conclusions, I will also look to your established substack for best practice.
Hi Natasha…I really like your approach and what you are trying to do with your newsletter – I believe the majority of us are (or soon will be) living with some kind of chronic illness. Some might be manageable while others require much more maintenance. As for me, I’ve been living well and happily with MS since 2009 – it’s been a challenge with many upsides.
What strikes me (and appeals to me) is the space between acceptance, what the medical experts say and the day-to-day management of the illness. I find the constant balancing act is both frightening and strangely exhilarating. Frightening because there’s always that small voice in the head whispering what ifs, but also exhilarating because the roller coaster ride has just as many ups as downs. I’ve found chronic illnesses often expose weaknesses and feast on self-confidence…but at the same time, a chronic illness eventually makes people stronger and turns them into a better person.
I’m looking forward to following your story a bit closer…
Natasha, this sounds really great! Sometimes we don't really know or understand what sort of illnesses someone might be dealing with, and you are educating people about that. It is great that you can write and that everyone is understanding if you can't sometimes. Guess that is how Substackers roll! Keep up the great work!
Very insightful interview. Thank you. I totally relate to people seeing me as healthy and fine while walking slower than a snail due to chronic illness. Humour helps :) xo
"I’m trying to learn a different way of being creative, one that enables me to be more mindful of taking breaks and not pushing myself too far. It’s … a work in progress."
Good for you. Keep up the good work writing and progressing health wise.
Thank you so much for sharing this. I am writing my newsletter about Disability Rights. I developed asthma as a result of being exposed o second-hand tobacco smoke in the work place. I am sharing my story and reaching out to others who suffer from asthma, chronic bronchitis, COPD and chemical sensitivity as President and Founder of Arizonans for Non-Smokers' Rights.
Thank you Natasha for sharing ❤️