Reading this conversation nearly made me cry because of how terrifying it is to be unwell, ask for help and be scoffed at or gaslit. This has been my experience with the medical industry also. Autism makes it hard for me to advocate for myself as in the moment, I fail to recognise I'm being mistreated and even if I did recognise it words fail me in times of stress.
Tilly is so full of joy and this was a really insightful interview, thank you for sharing. Her positive outlook is one I hope to achieve.
Thanks so much Lydia! If it helps, I definitely don't always have a positive outlook - allow yourself to have whatever outlook you have naturally while you're experiencing mistreatment. Try not to mistreat yourself for having a human response! Ill and disabled people don't owe anyone a positive outlook - we owe ourselves honesty and support. Sending you huge love and I hope you find someone who can advocate for you sometimes x
Thank you so much, Lydia. I completely relate to this feeling in the medical industry as an autistic woman. I too have trouble speaking when in intense stress, and it can lead to feeling like I didn't advocate for myself.
What's helped me a little bit is not to blame myself afterward, but to journal and write about the experience, to let the emotions out instead of stagnating. And then I'll make a note for a future specific experience that I don't want to allow to happen again and write like a little script scenario.
For example, in my last appointment I told a doctor I had hEDS and then she proceeded to (obviously not believe me and) examine me by stretching all my joints to their limits (which is actually quite dangerous for a person with connective tissue problems and can lead to inflammation and micro-tears). Afterward I felt so mad at myself for not stopping her, but I tried not to dwell. I took out my ongoing doctors notes document and I added in language for future appointments where when a doctor says they want to examine me I can proceed it by reading or showing them a statement that says why this practice is not helpful and I would like them to not do it.
I know it doesn't make it hurt less or make it easier in the long run, but know that you're not alone. Sending you so much compassion.
This was a fantastic interview! Thank you, Tilly, for sharing the deepest creative parts of yourself. Many parts of both your experiences were, unfortunately, relatable and devastating to read. I still panic going to a doctor I’ve seen a million times if I don’t look “put together.” I fear that with some of my diagnoses being newer (taking over half my life to put a name to them), they will roll their eyes or wonder why suddenly I have a diagnosis, even if it’s a condition I have always had, just couldn’t name or get properly diagnosed when I was younger.
Tilly, I appreciate your use of mobility aids and making them a part of your wardrobe. I recently started using a cane and wanted a sparkly one. Although I still feel a little intimidated using it in certain settings, the sparkle gives me confidence!
Thank you, Katie! I completely relate to this feeling. Going to the doctor is so unnecessarily stressful when I'm always worried about being dismissed and disbelieved. Also I love this sooo much rocking the sparkly cane!!
Yes, it has helped me more with my mobility than I anticipated, but the problem is that it’s a newer aid that I started using in the past year, so I’m still way too self conscious about it; I can definitely relate to what you mentioned about feeling intimidated to use it in certain settings!
I really enjoyed this article! It‘s horrific how hostile the world and especially the medical world is towards disabled people. I relate so much to the whole masking and then not being believed issue, and I hate how universal these experiences are.
„We’re also no different in having so many potential sources of joy and beauty and satisfaction, if we’re allowed by society to access them.“ This is so true, but god forbid a disabled person have any modicum of fun! It often seems to me that disabled people must appear downtrodden, poor and miserable all the time, or they will come under suspicion of not being disabled ‚enough‘, faking, and what not.
That you wear your gorgeous clothes and decorate your mobility aids is a beautiful resistance to this! 🌻
I hope one day society will grow a sense of empathy…
Thank you Martha. Yes, it’s so cruel how disability joy and beauty are treated with suspicion, as though we must prove our suffering at all times. It’s true that resistance can look like refusing to be downtrodden, even when the world demands it. Here’s to empathy and to claiming joy anyway.☺️❤️🩹
Thank you that's so kind ❤️ I'm so sorry that Dr treated you so badly! I relate. I know there are plenty of good Drs out there but the gaslighting is so common for people with a disability.
What youre going through day to day sounds really tough.
I use scripts & journaling too, usually starting with a very unfiltered word dump! then move onto a more thoughtful enquiry of my feelings :) so great for getting clarity and healing.
I feel so immersed and engaged with this interview, and both stories. Thank you for sharing. The vibe was inviting to me, and I felt like I was in the room. I have struggled with expressing myself through fashion, partly because I wore a uniform to school for years and I wasn't allowed to choose my clothes. Self expression is so important (I made up for it later by pursuing makeup artistry).
Navigating life with limitations is newer to me and I don't feel like an expert. Even though I've had scoliosis my whole life, it didn't take a toll on me until my mid-30s. I am 48 now. I have not fully accepted my limitations and adapted. Reading your heartfelt life stories has opened my mind and my heart more. Thank you for helping me become more aware of your journeys, and how you both moved through them.
The joy I experience every day is spending time with my husband, cats, parents, and friends. I thought I'd end my comment with thoughts of joy, too.
I love these glimpses of your joys, Mara. Thank you so much for sharing. I feel much the same that this path is not easy and not linear, especially when it comes to acceptance within myself. Sending you lots of compassion.
Thank you both for this conversation. Tilly is so articulate, I wish I had some of that when going on medical appointments. And I love the focus on joy!
Thanks so much Sara! If it helps, I've been chronically unwell for 15 years so have had lots of time to think about my experiences and find words to describe them. I definitely was not always this articulate! Thank you for reading and for your support x
There were parts of this conversation that I found so relatable, and many others that were expansive for me. I really loved how the power of joy and fashion sat right next to the inability to 'win' when navigating the medical system and the inaccessibility of the music industry - it felt like such a thoughtful and nuanced look into both of your worlds. Thank you both! x
Thanks so much Sophie! I really wanted to recognise the power of clothing to mould our social realities while also recognising its limits. I'm so glad it came across x
Thank you! I'm honored that it resonated and that you could feel both the joy and the challenges where they intersect. Your words mean so much, Sophie ❤️
I cannot stop crying after reading this interview… I’m 40 years old now, and I’ve been physically and mentally disabled since 2010. This brought back so many memories of how badly I was treated in those early years and then how hard I had to fight and advocate for myself to get proper treatment and support. I felt so much guilt and shame for my limitations that I didn’t really start openly identifying myself as disabled until 2019, and I can gratefully say that finally accepting and owning my disabilities, and labeling myself as disabled, has been so liberating for me. Thank you both so very much for sharing your experiences 🩷
Sending you so much love Allison! It took me so many years too before I could accept the term disabled. It's a big process, lots of emotions, lots of grief, lots of acceptance.
Wonderful, eye-opening, in-depth interview. Thank you for sharing.
Thank you so much Gail!
Reading this conversation nearly made me cry because of how terrifying it is to be unwell, ask for help and be scoffed at or gaslit. This has been my experience with the medical industry also. Autism makes it hard for me to advocate for myself as in the moment, I fail to recognise I'm being mistreated and even if I did recognise it words fail me in times of stress.
Tilly is so full of joy and this was a really insightful interview, thank you for sharing. Her positive outlook is one I hope to achieve.
Thanks so much Lydia! If it helps, I definitely don't always have a positive outlook - allow yourself to have whatever outlook you have naturally while you're experiencing mistreatment. Try not to mistreat yourself for having a human response! Ill and disabled people don't owe anyone a positive outlook - we owe ourselves honesty and support. Sending you huge love and I hope you find someone who can advocate for you sometimes x
That's true...I still mistreat myself but I'm getting better. Thank you for the love, back at you! ❤️
Thank you so much, Lydia. I completely relate to this feeling in the medical industry as an autistic woman. I too have trouble speaking when in intense stress, and it can lead to feeling like I didn't advocate for myself.
What's helped me a little bit is not to blame myself afterward, but to journal and write about the experience, to let the emotions out instead of stagnating. And then I'll make a note for a future specific experience that I don't want to allow to happen again and write like a little script scenario.
For example, in my last appointment I told a doctor I had hEDS and then she proceeded to (obviously not believe me and) examine me by stretching all my joints to their limits (which is actually quite dangerous for a person with connective tissue problems and can lead to inflammation and micro-tears). Afterward I felt so mad at myself for not stopping her, but I tried not to dwell. I took out my ongoing doctors notes document and I added in language for future appointments where when a doctor says they want to examine me I can proceed it by reading or showing them a statement that says why this practice is not helpful and I would like them to not do it.
I know it doesn't make it hurt less or make it easier in the long run, but know that you're not alone. Sending you so much compassion.
This was a fantastic interview! Thank you, Tilly, for sharing the deepest creative parts of yourself. Many parts of both your experiences were, unfortunately, relatable and devastating to read. I still panic going to a doctor I’ve seen a million times if I don’t look “put together.” I fear that with some of my diagnoses being newer (taking over half my life to put a name to them), they will roll their eyes or wonder why suddenly I have a diagnosis, even if it’s a condition I have always had, just couldn’t name or get properly diagnosed when I was younger.
Tilly, I appreciate your use of mobility aids and making them a part of your wardrobe. I recently started using a cane and wanted a sparkly one. Although I still feel a little intimidated using it in certain settings, the sparkle gives me confidence!
Thank you, Katie! I completely relate to this feeling. Going to the doctor is so unnecessarily stressful when I'm always worried about being dismissed and disbelieved. Also I love this sooo much rocking the sparkly cane!!
omg I have literally been shopping for stylish/chic/unique walking canes for a few months now, and the one I have now is sparkly pink! 💖
Sparkly pink!!! So cute! I hope it's helping you with mobility.
Yes, it has helped me more with my mobility than I anticipated, but the problem is that it’s a newer aid that I started using in the past year, so I’m still way too self conscious about it; I can definitely relate to what you mentioned about feeling intimidated to use it in certain settings!
I get that, I’ve only had mine for about two months. It will get easier! Just have to remember how much it helps us and move past the rest. ❤️🩹
I really enjoyed this article! It‘s horrific how hostile the world and especially the medical world is towards disabled people. I relate so much to the whole masking and then not being believed issue, and I hate how universal these experiences are.
„We’re also no different in having so many potential sources of joy and beauty and satisfaction, if we’re allowed by society to access them.“ This is so true, but god forbid a disabled person have any modicum of fun! It often seems to me that disabled people must appear downtrodden, poor and miserable all the time, or they will come under suspicion of not being disabled ‚enough‘, faking, and what not.
That you wear your gorgeous clothes and decorate your mobility aids is a beautiful resistance to this! 🌻
I hope one day society will grow a sense of empathy…
Thank you Martha. Yes, it’s so cruel how disability joy and beauty are treated with suspicion, as though we must prove our suffering at all times. It’s true that resistance can look like refusing to be downtrodden, even when the world demands it. Here’s to empathy and to claiming joy anyway.☺️❤️🩹
Thank you that's so kind ❤️ I'm so sorry that Dr treated you so badly! I relate. I know there are plenty of good Drs out there but the gaslighting is so common for people with a disability.
What youre going through day to day sounds really tough.
I use scripts & journaling too, usually starting with a very unfiltered word dump! then move onto a more thoughtful enquiry of my feelings :) so great for getting clarity and healing.
I feel so immersed and engaged with this interview, and both stories. Thank you for sharing. The vibe was inviting to me, and I felt like I was in the room. I have struggled with expressing myself through fashion, partly because I wore a uniform to school for years and I wasn't allowed to choose my clothes. Self expression is so important (I made up for it later by pursuing makeup artistry).
Navigating life with limitations is newer to me and I don't feel like an expert. Even though I've had scoliosis my whole life, it didn't take a toll on me until my mid-30s. I am 48 now. I have not fully accepted my limitations and adapted. Reading your heartfelt life stories has opened my mind and my heart more. Thank you for helping me become more aware of your journeys, and how you both moved through them.
The joy I experience every day is spending time with my husband, cats, parents, and friends. I thought I'd end my comment with thoughts of joy, too.
I love these glimpses of your joys, Mara. Thank you so much for sharing. I feel much the same that this path is not easy and not linear, especially when it comes to acceptance within myself. Sending you lots of compassion.
Thank you! Sending you compassion as well. 🥰
Thank you both for this conversation. Tilly is so articulate, I wish I had some of that when going on medical appointments. And I love the focus on joy!
Thanks so much Sara! If it helps, I've been chronically unwell for 15 years so have had lots of time to think about my experiences and find words to describe them. I definitely was not always this articulate! Thank you for reading and for your support x
There were parts of this conversation that I found so relatable, and many others that were expansive for me. I really loved how the power of joy and fashion sat right next to the inability to 'win' when navigating the medical system and the inaccessibility of the music industry - it felt like such a thoughtful and nuanced look into both of your worlds. Thank you both! x
Thanks so much Sophie! I really wanted to recognise the power of clothing to mould our social realities while also recognising its limits. I'm so glad it came across x
Thank you! I'm honored that it resonated and that you could feel both the joy and the challenges where they intersect. Your words mean so much, Sophie ❤️
I cannot stop crying after reading this interview… I’m 40 years old now, and I’ve been physically and mentally disabled since 2010. This brought back so many memories of how badly I was treated in those early years and then how hard I had to fight and advocate for myself to get proper treatment and support. I felt so much guilt and shame for my limitations that I didn’t really start openly identifying myself as disabled until 2019, and I can gratefully say that finally accepting and owning my disabilities, and labeling myself as disabled, has been so liberating for me. Thank you both so very much for sharing your experiences 🩷
Sending you so much love Allison! It took me so many years too before I could accept the term disabled. It's a big process, lots of emotions, lots of grief, lots of acceptance.