I'm studying to become a nutritionist and your post was so vulnerable - thank you for being so open about your experiences - and also incredibly valuable in that you gave such specific examples about what it's like to be living with Type 1 Diabetes, real world experiences that a textbook and (virtual) classroom don't offer. I'll be referring back to this particular newsletter issue frequently. Thank you so much.
Wishing you a happy New Year and all the peace and patience you can find regarding Type 1. My mom has had it since childhood and never wanted people besides immediate family to know about it and I never understood why until I was older, but I've heard her echo your exact same sentiments so many times. I also have a cousin with Type 1 and a partner with an invisible chronic illness - many loved ones in my life have verbalized over and over throughout this pandemic the same words you're sharing. You don't need validation from a random internet stranger, but please know that you're not alone and that everything you're saying is so valid and important. Thank you for always wording your thoughts so elegantly!
Thanks for writing this! I have an invisible(-ish) chronic disorder myself, which while not life threatening, dictates all of my life choices. I've always been thankful to advocates that have shared their lived experiences. It gave me the courage to talk about mine, find community, and look for resources. It takes away from the stigma and the loneliness of it all! Having to explain/defend/justify can be SO SO exhausting.
Thank you so much for reading! I hear you -- I often don't really want to talk about it, but it consumes so much of our time and impacts my decisions and I felt like people in my life knew virtually nothing about how it impacts my day to day so it was time, finally, to talk about it a little. Totally understand the struggle, and hope you are feeling well and taking care of yourself
Thanks so much for writing this. Being a non-binary trans person, I completely agree that most people cannot handle any ambiguity or something they cannot put in a box. Also, invisible illness is really hard, and i would love it if people would refrain from offering “advice.” I think a lot of it comes out of their fear of illness and thinking that if they pinpoint an exact cause they can avoid.
Thank you for sharing. It's so weird, right, people REALLY want to be able to put you in a box and struggle so much with ambiguity. And yeah, I am generally not interested in people's advice, either, unless they're a fellow type 1!
You are not alone at all, being a parent of T1D child, we have to deal with a lot of painful acts such as trying counselling our child again and again in different calmer ways. Sometimes it really feel bad to hold her before any kind of food intake and count and inject insulin in her body. I know this is the most stupidest disease ever!!! I read you and as i said, you are absolutely not alone.
I just observed my 10-year "diaversary" — I'm a Type 2 who presented as a possibly T1 or MODY, and though I was only on insulin in the beginning, I remember what it was like to do a million calculations. And yes, the failure of others to understand (or want to understand) the vagaries and whims of diabetes issues can make it all more frustrating than it has to be. You explained everything with eloquence and vulnerability, representing so many who lack the words or the energy to explain it all again.
I'm studying to become a nutritionist and your post was so vulnerable - thank you for being so open about your experiences - and also incredibly valuable in that you gave such specific examples about what it's like to be living with Type 1 Diabetes, real world experiences that a textbook and (virtual) classroom don't offer. I'll be referring back to this particular newsletter issue frequently. Thank you so much.
Wishing you a happy New Year and all the peace and patience you can find regarding Type 1. My mom has had it since childhood and never wanted people besides immediate family to know about it and I never understood why until I was older, but I've heard her echo your exact same sentiments so many times. I also have a cousin with Type 1 and a partner with an invisible chronic illness - many loved ones in my life have verbalized over and over throughout this pandemic the same words you're sharing. You don't need validation from a random internet stranger, but please know that you're not alone and that everything you're saying is so valid and important. Thank you for always wording your thoughts so elegantly!
Thanks for sharing this--I didn't know much about type 1 diabetes and I learned a lot.
Thank you for reading!
Thanks for writing this! I have an invisible(-ish) chronic disorder myself, which while not life threatening, dictates all of my life choices. I've always been thankful to advocates that have shared their lived experiences. It gave me the courage to talk about mine, find community, and look for resources. It takes away from the stigma and the loneliness of it all! Having to explain/defend/justify can be SO SO exhausting.
Thank you so much for reading! I hear you -- I often don't really want to talk about it, but it consumes so much of our time and impacts my decisions and I felt like people in my life knew virtually nothing about how it impacts my day to day so it was time, finally, to talk about it a little. Totally understand the struggle, and hope you are feeling well and taking care of yourself
Such a vitally important read, Nisha. Thank you for penning these words. You will be helping so many 🙏🏼
Thank you, Susan!
Thanks so much for writing this. Being a non-binary trans person, I completely agree that most people cannot handle any ambiguity or something they cannot put in a box. Also, invisible illness is really hard, and i would love it if people would refrain from offering “advice.” I think a lot of it comes out of their fear of illness and thinking that if they pinpoint an exact cause they can avoid.
Thank you for sharing. It's so weird, right, people REALLY want to be able to put you in a box and struggle so much with ambiguity. And yeah, I am generally not interested in people's advice, either, unless they're a fellow type 1!
You are not alone at all, being a parent of T1D child, we have to deal with a lot of painful acts such as trying counselling our child again and again in different calmer ways. Sometimes it really feel bad to hold her before any kind of food intake and count and inject insulin in her body. I know this is the most stupidest disease ever!!! I read you and as i said, you are absolutely not alone.
Thanks for sharing this! It is hard having invisible and/or autoimmune illnesses normally but especially during the pandemic.
It's an incredible journey and you brought back so many of my memories from my first year as a T1D.
I just observed my 10-year "diaversary" — I'm a Type 2 who presented as a possibly T1 or MODY, and though I was only on insulin in the beginning, I remember what it was like to do a million calculations. And yes, the failure of others to understand (or want to understand) the vagaries and whims of diabetes issues can make it all more frustrating than it has to be. You explained everything with eloquence and vulnerability, representing so many who lack the words or the energy to explain it all again.