Website/Blog, Twitter, & Instagram Handle
InsomniaDoodles.com, @InsomniaDoodles (on Twitter), @theinsomniadoodles (on instagram)
Name *
Sunshine "Sunny" Ammerman
Disorder Info
What is your disorder? *
Septo-Optic Dysplasia, which is a larger rare diagnosis that encompasses two other rare diagnoses, Panhypopituitarism and Optic Nerve Hypoplasia. I am also missing a membrane in my brain called the "septum pellucidum".
At what age did your disorder become a daily issue? *
0
Who were you before your illness became debilitating? *
Just an outdoorsy kid with a big imagination! My symptoms started to become gradually more debilitating in high school, so I didn't really have the chance to do much more than dream about what I thought I wanted my future to be like. My symptoms became unavoidably debilitating when I was in my early 20s.
What would you do if you were not dealing with your disorder and/or disability? *
I would be getting myself into all kinds of (good) trouble either as a journalist or legislator, more than likely. I would have loved to travel, meet as many different people as possible, and make a difference in some way. I think I have an activist's spirit. Having a rare disease and invisible disability just gave me a clear path to put that enthusiasm to work!
What would you like people to know about your daily life? *
I have no idea what kind of day I'm going to have until I wake up that day and assess my symptoms and energy levels. I'm a D&D nerd, so I like to compare it to waking up and rolling a D20. Sometimes it's a natural 1, other times it's just fine, but it's hard to make plans ahead of time when you never know what any given day has in store for your body's ability to function.
What would make living and moving in the world easier for you? *
Breaking the stigma of invisible illnesses and disabilities throughout our society would help tremendously, but practically speaking, as a partially blind person who can not drive due to my low vision, access to reliable, affordable transportation is KEY to my independence. I wanted to take an undergraduate digital art class at Purdue last year, and I lost that opportunity simply because I couldn't find transportation to go to that class, despite having swallowed my pride and asking everyone I could think to ask for help. That was disheartening, but inspired me to put more pressure on local leadership, which led to our previous mayor lovingly calling me "trouble" as a nickname! haha
Do you have any life hacks? *
Yes, indeed! UTILIZE TECHNOLOGY! Robots are our friends! I have smart speakers in my house that I have scheduled to remind me when to take my meds throughout the day as well as reminding me to take time to exercise or meditate, get ready for bed, and simply to eat lunch. I'm almost 30 years old, and until I started doing this, I had a bad habit of forgetting to take my meds (even though I've been taking them multiple times a day every day since I was 13. oops). Other than my speakers, I use Trello to help keep my tasks in order since its not uncommon for me to experience brain fog and totally forget important things on my mental to-do list. I also rely on my smart watch to help track health data relevant to my care plan.
What kind of support do you get from family or friends? *
I have been so, so lucky to have a partner who is understanding, patient, and more kind to me than I am to myself sometimes. He has seen me at my absolute lowest points and helped to carry me through it. He is incredible. I'm also super lucky to have friends and family members who understand and are willing to learn about and adapt to my needs. Of course, I've also encountered some family members and acquaintances who have been less than kind to me, and I've experienced some judgement and skepticism that stung, but I've learned over time that you can't win them all, so it's really their loss that they don't get to have me in their life. I don't put up with people like that if I can help it. "ya-yeet" as the kids say these days
Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
OH BOY DO I. I'll share one experience in particular that is still vividly clear in my memory because I was so livid when it happened. I used to work at Kroger, and I actually loved my job there. I have a great work ethic, and this was before my body put its proverbial foot down and insisted on not working anymore. My bosses loved my gusto, and I'm a people-pleaser so I would often come in on my days off if called and fill in anywhere I was needed. I had been working there for about eight months or so and management hired a new manager, who was unaware of my health issues. When I was hired on initially, I warned the manager who had interviewed me about my potential health problems. I had told him before the interview was even over that I may eventually just not be able to continue working, because that had happened to me in the past at another job. He decided to give me a chance, and so I gave this job everything I had, I was so grateful. Anyway, this new manager came in with no idea about the warning I had given my other boss, and she saw my work ethic and was impressed. She offered me a promotion! I was asked to manage my very own department within the store. When she pitched this idea to me, I was ECSTATIC. I was just so overwhelmed with joy that someone trusted me enough to manage an entire department on my own, so I told her yes without really thinking too much about it. Later on when I had more of a chance to think, I had to acknowledge that lately my symptoms had been getting worse. I had already had an adrenal crisis that put me in the hospital, and a subsequent illness that put me out of commission for a couple of weeks. Since then, my daily symptoms had worsened and I never felt fully recovered. Recognizing the signs that had forced me to leave my previous job, I just didn’t think it would be responsible for me to take on a management role by myself. If I had to miss work for any amount of time, my department would suffer, and that would in turn reflect negatively on the entire store. Despite my eagerness to please, I decided to go back into her office the next day (on my day off, mind you) and talk to her about it. I asked if the other manager had told her about my health condition. She said he had not, so I went on to explain what my diagnosis is, and how it affects my body’s ability to function. I poured my heart out to her, and told her very personal information that made me feel so vulnerable. Admitting you have limits SUCKS, but I needed her to understand. After I explained it the best way I could, I went on to say that as much as I felt honored that she wanted me to take on this promotion, I thought the store should pick an employee that will be better able to keep up with a management role. She then looked me right in the eyes and said “You know what I think? I think you don’t WANT to do it.” I remember standing there in stunned silence for a few seconds. I can still feel the ways my ears and cheeks filled with heat, my hands started to tremble. I wanted to grab her by her skinny ableist neck and shake vigorously, but somehow I managed to keep calm. I am proud of what I said next; “I understand how having an employee who isn’t doing what you want them to do might be frustrating for you, but imagine what it’s like having a body that doesn’t do what you want it to do.” I don’t think she really grasped how serious she screwed up, because she had the audacity to ask me again to take the management role. I told her no, and left. I continued to work there for a few months more before my health deteriorated too much to continue, and I faced more discrimination from her, which I can discuss on the show. My co-workers were in my corner, and when they saw the way she was treating me, they stepped in, which was amazing of them. I tear up still thinking back on that.
How has your chronic illness affected your relationships? *
It caused some strife between my father and I. I still have some painful memories of him blatantly telling me he thought I just wasn't trying hard enough even though I was facing severely debilitating symptoms. We didn't talk for a brief time after that, but he came around eventually and now understands the reality of my situation. Other than that, I have actually been really lucky to have friends and family who are really understanding and still invite me to things even though they understand I might not always be able to come, and they never let me feel guilty for cancelling plans.
Is there anything you are afraid to tell people in your life? *
Honestly? No, I'm an open book. I used to be shy about sharing the reality of my situation, but when I came to the realization that hiding the truth fuels the stigma faced by the invisible illness community, I couldn't let myself contribute to that anymore. Now, I'm unapologetically open about what I go through. I do want to point out that despite being open, I am careful not to come across as negative or a "complainer". I think it's absolutely possible to share the way our conditions affect us without wallowing in it. Not saying we should dive into toxic positivity and act like it doesn't suck, because it absolutely does sometimes, I just like to make sure people understand I don't want pity, I want understanding.
What is your best coping mechanism? *
Do naps count? I do enjoy a good old-fashioned nap sometimes. Other than that, I've found that just talking things through with someone who REALLY understands and cares about you is the most healing thing I've ever done for myself.
What are you the most concerned about and the most hopeful for in the future? *
I'm concerned about healthcare access for people like myself who CAN NOT go without constant medical care. I am personally a big proponent of medicare for all, and seeing insurance coverage for many Americans being put in jeopardy by the current administration has me very concerned indeed. What has me hopeful is the overwhelming support for medicare for all by so many young people, who are indeed the future of this country. I love their enthusiasm! They give me hope for the future.
Is there anything you *don't* want to talk about? Is there a subject we should avoid during the interview? Are you ok with having the video released on YouTube under our Invisible Not Broken YouTube channel? *
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
I want to give a shout out to the National Organization for Rare Disorders (NORD) and their Rare Action Network (RAN). I am the Community Engagement Liaison for the Indiana branch of RAN, and it would be awesome if I could share our contact info so people can reach out and learn more! Also, I was JUST informed that NORD is about to start their own official podcast called "NORDpod", and it would be really cool if I could announce that during the interview as well, but I totally understand if you would rather not promote another podcast. :) Other than that, I would love to mention the weekly support group I host for invisible illnesses and disabilities! It's called "positively invisible" and we meet in virtual reality on a platform called "Altspace" every Sunday at 7pm EST. As the title suggests, we approach life with invisible conditions with a more positive outlook, but without giving in to toxic positivity. We just come together to check in, support one another, and set small attainable weekly goals to help keep us motivated. We also have a discord server where we can chat between meetups, and I post links to upcoming events. I also need to give a shoutout to my zebra sister Katrina for introducing me to this podcast last year. I love it. <3
What makes you energized or enthusiastic? What drains you?
I am absolutely energized by the potential to make a difference! I get so excited about opportunities to raise awareness and lift up the voices of my fellow zebra spoonies! I tend to be drained by negative people mostly, but I also have a hard time dealing with the chores and tasks that pile up when I'm experiencing a symptom flare-up. That's absolutely EXHAUSTING.
Any favorite books or shows?
Favorite books? Basically anything written by so cal psychologist / behavioral economist Dan Ariely. Parks and Recreation is easily my all-time favorite show, but I'm currently binging Community.
What is the hardest and/or best lesson your condition has taught you?
The hardest and best lesson I have learned through all of this is that there is no shame in accepting that you have limits, and respecting those limits. Some ignorant people are going to judge you for it, but that reflects poorly on them, not you. You have to be emotionally strong where your physical strength is lacking.
What is the best purchase under $100 that helped your life
My amazon echo dot! Those medication reminders are a game-changer.
Any questions you think we should add to this list?
I think your questions are all great! I feel like all the important stuff was covered. If I had to come up with something else to ask... maybe I would ask what treatments the guest has to do to treat their illness, if there are any. I'm sure things like that come up naturally in the interview anyway. :) Thanks so much! <3
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By Monica Michelle Invisible Not Broken
5
77 ratings
Website/Blog, Twitter, & Instagram Handle
InsomniaDoodles.com, @InsomniaDoodles (on Twitter), @theinsomniadoodles (on instagram)
Name *
Sunshine "Sunny" Ammerman
Disorder Info
What is your disorder? *
Septo-Optic Dysplasia, which is a larger rare diagnosis that encompasses two other rare diagnoses, Panhypopituitarism and Optic Nerve Hypoplasia. I am also missing a membrane in my brain called the "septum pellucidum".
At what age did your disorder become a daily issue? *
0
Who were you before your illness became debilitating? *
Just an outdoorsy kid with a big imagination! My symptoms started to become gradually more debilitating in high school, so I didn't really have the chance to do much more than dream about what I thought I wanted my future to be like. My symptoms became unavoidably debilitating when I was in my early 20s.
What would you do if you were not dealing with your disorder and/or disability? *
I would be getting myself into all kinds of (good) trouble either as a journalist or legislator, more than likely. I would have loved to travel, meet as many different people as possible, and make a difference in some way. I think I have an activist's spirit. Having a rare disease and invisible disability just gave me a clear path to put that enthusiasm to work!
What would you like people to know about your daily life? *
I have no idea what kind of day I'm going to have until I wake up that day and assess my symptoms and energy levels. I'm a D&D nerd, so I like to compare it to waking up and rolling a D20. Sometimes it's a natural 1, other times it's just fine, but it's hard to make plans ahead of time when you never know what any given day has in store for your body's ability to function.
What would make living and moving in the world easier for you? *
Breaking the stigma of invisible illnesses and disabilities throughout our society would help tremendously, but practically speaking, as a partially blind person who can not drive due to my low vision, access to reliable, affordable transportation is KEY to my independence. I wanted to take an undergraduate digital art class at Purdue last year, and I lost that opportunity simply because I couldn't find transportation to go to that class, despite having swallowed my pride and asking everyone I could think to ask for help. That was disheartening, but inspired me to put more pressure on local leadership, which led to our previous mayor lovingly calling me "trouble" as a nickname! haha
Do you have any life hacks? *
Yes, indeed! UTILIZE TECHNOLOGY! Robots are our friends! I have smart speakers in my house that I have scheduled to remind me when to take my meds throughout the day as well as reminding me to take time to exercise or meditate, get ready for bed, and simply to eat lunch. I'm almost 30 years old, and until I started doing this, I had a bad habit of forgetting to take my meds (even though I've been taking them multiple times a day every day since I was 13. oops). Other than my speakers, I use Trello to help keep my tasks in order since its not uncommon for me to experience brain fog and totally forget important things on my mental to-do list. I also rely on my smart watch to help track health data relevant to my care plan.
What kind of support do you get from family or friends? *
I have been so, so lucky to have a partner who is understanding, patient, and more kind to me than I am to myself sometimes. He has seen me at my absolute lowest points and helped to carry me through it. He is incredible. I'm also super lucky to have friends and family members who understand and are willing to learn about and adapt to my needs. Of course, I've also encountered some family members and acquaintances who have been less than kind to me, and I've experienced some judgement and skepticism that stung, but I've learned over time that you can't win them all, so it's really their loss that they don't get to have me in their life. I don't put up with people like that if I can help it. "ya-yeet" as the kids say these days
Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
OH BOY DO I. I'll share one experience in particular that is still vividly clear in my memory because I was so livid when it happened. I used to work at Kroger, and I actually loved my job there. I have a great work ethic, and this was before my body put its proverbial foot down and insisted on not working anymore. My bosses loved my gusto, and I'm a people-pleaser so I would often come in on my days off if called and fill in anywhere I was needed. I had been working there for about eight months or so and management hired a new manager, who was unaware of my health issues. When I was hired on initially, I warned the manager who had interviewed me about my potential health problems. I had told him before the interview was even over that I may eventually just not be able to continue working, because that had happened to me in the past at another job. He decided to give me a chance, and so I gave this job everything I had, I was so grateful. Anyway, this new manager came in with no idea about the warning I had given my other boss, and she saw my work ethic and was impressed. She offered me a promotion! I was asked to manage my very own department within the store. When she pitched this idea to me, I was ECSTATIC. I was just so overwhelmed with joy that someone trusted me enough to manage an entire department on my own, so I told her yes without really thinking too much about it. Later on when I had more of a chance to think, I had to acknowledge that lately my symptoms had been getting worse. I had already had an adrenal crisis that put me in the hospital, and a subsequent illness that put me out of commission for a couple of weeks. Since then, my daily symptoms had worsened and I never felt fully recovered. Recognizing the signs that had forced me to leave my previous job, I just didn’t think it would be responsible for me to take on a management role by myself. If I had to miss work for any amount of time, my department would suffer, and that would in turn reflect negatively on the entire store. Despite my eagerness to please, I decided to go back into her office the next day (on my day off, mind you) and talk to her about it. I asked if the other manager had told her about my health condition. She said he had not, so I went on to explain what my diagnosis is, and how it affects my body’s ability to function. I poured my heart out to her, and told her very personal information that made me feel so vulnerable. Admitting you have limits SUCKS, but I needed her to understand. After I explained it the best way I could, I went on to say that as much as I felt honored that she wanted me to take on this promotion, I thought the store should pick an employee that will be better able to keep up with a management role. She then looked me right in the eyes and said “You know what I think? I think you don’t WANT to do it.” I remember standing there in stunned silence for a few seconds. I can still feel the ways my ears and cheeks filled with heat, my hands started to tremble. I wanted to grab her by her skinny ableist neck and shake vigorously, but somehow I managed to keep calm. I am proud of what I said next; “I understand how having an employee who isn’t doing what you want them to do might be frustrating for you, but imagine what it’s like having a body that doesn’t do what you want it to do.” I don’t think she really grasped how serious she screwed up, because she had the audacity to ask me again to take the management role. I told her no, and left. I continued to work there for a few months more before my health deteriorated too much to continue, and I faced more discrimination from her, which I can discuss on the show. My co-workers were in my corner, and when they saw the way she was treating me, they stepped in, which was amazing of them. I tear up still thinking back on that.
How has your chronic illness affected your relationships? *
It caused some strife between my father and I. I still have some painful memories of him blatantly telling me he thought I just wasn't trying hard enough even though I was facing severely debilitating symptoms. We didn't talk for a brief time after that, but he came around eventually and now understands the reality of my situation. Other than that, I have actually been really lucky to have friends and family who are really understanding and still invite me to things even though they understand I might not always be able to come, and they never let me feel guilty for cancelling plans.
Is there anything you are afraid to tell people in your life? *
Honestly? No, I'm an open book. I used to be shy about sharing the reality of my situation, but when I came to the realization that hiding the truth fuels the stigma faced by the invisible illness community, I couldn't let myself contribute to that anymore. Now, I'm unapologetically open about what I go through. I do want to point out that despite being open, I am careful not to come across as negative or a "complainer". I think it's absolutely possible to share the way our conditions affect us without wallowing in it. Not saying we should dive into toxic positivity and act like it doesn't suck, because it absolutely does sometimes, I just like to make sure people understand I don't want pity, I want understanding.
What is your best coping mechanism? *
Do naps count? I do enjoy a good old-fashioned nap sometimes. Other than that, I've found that just talking things through with someone who REALLY understands and cares about you is the most healing thing I've ever done for myself.
What are you the most concerned about and the most hopeful for in the future? *
I'm concerned about healthcare access for people like myself who CAN NOT go without constant medical care. I am personally a big proponent of medicare for all, and seeing insurance coverage for many Americans being put in jeopardy by the current administration has me very concerned indeed. What has me hopeful is the overwhelming support for medicare for all by so many young people, who are indeed the future of this country. I love their enthusiasm! They give me hope for the future.
Is there anything you *don't* want to talk about? Is there a subject we should avoid during the interview? Are you ok with having the video released on YouTube under our Invisible Not Broken YouTube channel? *
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
I want to give a shout out to the National Organization for Rare Disorders (NORD) and their Rare Action Network (RAN). I am the Community Engagement Liaison for the Indiana branch of RAN, and it would be awesome if I could share our contact info so people can reach out and learn more! Also, I was JUST informed that NORD is about to start their own official podcast called "NORDpod", and it would be really cool if I could announce that during the interview as well, but I totally understand if you would rather not promote another podcast. :) Other than that, I would love to mention the weekly support group I host for invisible illnesses and disabilities! It's called "positively invisible" and we meet in virtual reality on a platform called "Altspace" every Sunday at 7pm EST. As the title suggests, we approach life with invisible conditions with a more positive outlook, but without giving in to toxic positivity. We just come together to check in, support one another, and set small attainable weekly goals to help keep us motivated. We also have a discord server where we can chat between meetups, and I post links to upcoming events. I also need to give a shoutout to my zebra sister Katrina for introducing me to this podcast last year. I love it. <3
What makes you energized or enthusiastic? What drains you?
I am absolutely energized by the potential to make a difference! I get so excited about opportunities to raise awareness and lift up the voices of my fellow zebra spoonies! I tend to be drained by negative people mostly, but I also have a hard time dealing with the chores and tasks that pile up when I'm experiencing a symptom flare-up. That's absolutely EXHAUSTING.
Any favorite books or shows?
Favorite books? Basically anything written by so cal psychologist / behavioral economist Dan Ariely. Parks and Recreation is easily my all-time favorite show, but I'm currently binging Community.
What is the hardest and/or best lesson your condition has taught you?
The hardest and best lesson I have learned through all of this is that there is no shame in accepting that you have limits, and respecting those limits. Some ignorant people are going to judge you for it, but that reflects poorly on them, not you. You have to be emotionally strong where your physical strength is lacking.
What is the best purchase under $100 that helped your life
My amazon echo dot! Those medication reminders are a game-changer.
Any questions you think we should add to this list?
I think your questions are all great! I feel like all the important stuff was covered. If I had to come up with something else to ask... maybe I would ask what treatments the guest has to do to treat their illness, if there are any. I'm sure things like that come up naturally in the interview anyway. :) Thanks so much! <3