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.
They sure are scary. Fatigue and then depression and anxiety and some suicidal thoughts are some. Many people really do not understand this. They tend to think we are lazy and/or negative. I wish they understood. Some of their comments really hurt. I had a lady come up to me this summer and said(she already knew me but not real well evidently) "Why are you always so tired?" She said it in a very condescending tone as well, then walked on. I wish they would kindly just ask if they were curious, instead of being very careless, how they ask. Many are clueless.
More people really need to be educated! Thank you for being an author that wants to educate. I have epilepsy as well as some other chronic illnesses. I have written posts on epilepsy specifically as well. Maybe sometime we can put together a post or interview, just anything to educate people so that they learn and try to 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.
Thanks. I'll take a look as I've tried pretty much everything under the sun including two sleep studies, working with a psychologist and twice enduring the incredibly brutal sleep restriction therapy. Now I mostly just live alongside my insomnia, something that's just part of my life.
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.
I read your latest free article about the importance of choice of words, especially using words like warrior. I have come to similar conclusions. We need to be doing everything we can to calm our Nervous Systems, Immune Systems, inflammation, stressful emotional states and anxious thoughts, to address unhealthy relationships, to restore a sense of internal and external safety, and to send the message to our biology that “the war is over”, and I recommend "reject the Medical Institutionalized Narrative, which uses the language of war such as “battling the disease” or “fighting PD”, and instead focus on making peace inside and out;"
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…
Thanks so much for sharing, Jack. I definitely agree there's a space between acceptance and the balancing of the medical side and the day-to-day management. And often, there's not much support to help people figure out that place. I feel really fortunate to have had it.
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 :)
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!
Thank you for sharing, Neal! I'm so glad to hear that yours is treatable :)
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).
Thank you! And yes, I can relate to that so much!
How refreshing to hear your courage to confront what many will shy away from, thank you for sharing :)
Thank you!
I love your glam photos and curls. What kind of garden bush is that with blue flowers?
Thank you! I genuinely have no idea about the bush or the 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.
Thanks so much, Marco. And yes, absolutely.
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.
Thank you so much, Rebecca! And oh gosh yes, I need to still write about medication side effects! They have been so scary.
They sure are scary. Fatigue and then depression and anxiety and some suicidal thoughts are some. Many people really do not understand this. They tend to think we are lazy and/or negative. I wish they understood. Some of their comments really hurt. I had a lady come up to me this summer and said(she already knew me but not real well evidently) "Why are you always so tired?" She said it in a very condescending tone as well, then walked on. I wish they would kindly just ask if they were curious, instead of being very careless, how they ask. Many are clueless.
I'm sorry to hear you've been through all that
More people really need to be educated! Thank you for being an author that wants to educate. I have epilepsy as well as some other chronic illnesses. I have written posts on epilepsy specifically as well. Maybe sometime we can put together a post or interview, just anything to educate people so that they learn and try to 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.
Thanks so much, Michael. I actually did an episode on sleep tips for people for whom most of the basic sleep hygiene stuff just does not work. Perhaps it would be of interest? https://natashalipman.substack.com/p/how-to-sleep-chronic-illness-painsomnia
Thanks. I'll take a look as I've tried pretty much everything under the sun including two sleep studies, working with a psychologist and twice enduring the incredibly brutal sleep restriction therapy. Now I mostly just live alongside my insomnia, something that's just part of my life.
That's how I view my illnesses too!
That's why your interview resonated so much with me.
I'm glad :)
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.
Thanks Gary, I look forward to checking out your Substack!
I read your latest free article about the importance of choice of words, especially using words like warrior. I have come to similar conclusions. We need to be doing everything we can to calm our Nervous Systems, Immune Systems, inflammation, stressful emotional states and anxious thoughts, to address unhealthy relationships, to restore a sense of internal and external safety, and to send the message to our biology that “the war is over”, and I recommend "reject the Medical Institutionalized Narrative, which uses the language of war such as “battling the disease” or “fighting PD”, and instead focus on making peace inside and out;"
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…
Thanks so much for sharing, Jack. I definitely agree there's a space between acceptance and the balancing of the medical side and the day-to-day management. And often, there's not much support to help people figure out that place. I feel really fortunate to have had it.
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!
Thanks so much, Becky!
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
It certainly does!
"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, Giulietta!
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, Betty!
Thank you Natasha. I'm so glad to have found you.
Thank you Natasha for sharing ❤️
Thanks Eva!
Loved reading this interview Natasha!
Thanks so much!