Stay ConnectedThe podcast network that speaks to people with chronic illness, invisible illness, disability, and chronic pain.
“Explicitly Sick Podcast” with Monica Michelle + “[Human]care Podcast” with Eva Minkoff
Be Kind. Be Gentle. Be A Bad Ass.
Hosted on Acast. See acast.com/privacy for more information.
Keywords
Aggressive Systemic Mastocytosis, chronic illness, advocacy, mental health, writing, self-care, body image, healthcare activism, rare diseases, education
Summary
In this conversation, Rachel Largent Phillips shares her journey with aggressive systemic mastocytosis, a rare disorder that significantly impacts her daily life. She discusses the challenges of living with a chronic illness, including navigating the healthcare system, advocating for herself and others, and the emotional toll of writing her book, 'Life Beyond the Flare.' Rachel emphasizes the importance of self-care, mental health, and authenticity in the face of societal pressures and the complexities of living with a rare disease. She also highlights the political nature of healthcare and the need for continued advocacy for those with chronic illnesses.
Takeaways
Rachel was born with aggressive systemic mastocytosis, diagnosed in her 30s.
It took 12 years for her to receive a proper diagnosis.
Daily life is unpredictable, requiring constant vigilance and preparedness.
Advocacy is crucial; Rachel has lobbied for healthcare reforms.
Writing her book was a way to educate others about her rare disease.
Self-care and giving oneself grace are essential for managing chronic illness.
Rest can take many forms, including mental and emotional breaks.
Navigating relationships while managing a chronic illness can be challenging.
Societal beauty standards can add pressure to those with chronic illnesses.
Mental health is as important as physical health in chronic illness management.
Sound bites
"I was born with it."
"I have lots of EpiPens."
"It's okay to have bad days."
Chapters
00:00 Understanding Aggressive Systemic Mastocytosis
03:31 Navigating Daily Life with a Rare Disorder
07:47 Advocacy and Activism in Healthcare
10:51 The Emotional Journey of Writing a Book
13:48 Finding Grace in Chronic Illness
16:01 Rest and Self-Care Strategies
18:27 Managing Allergies and Anaphylaxis
21:33 Dating and Relationships with Chronic Illness
24:45 Societal Pressures and Body Image
29:11 The Importance of Mental Health
34:07 The Power of Authenticity
37:34 Navigating the Medical System
43:45 The Reality of Living with a Rare Disease
49:56 Pursuing Education Amidst Health Challenges
54:06 The Political Nature of Healthcare
Hosted on Acast. See acast.com/privacy for more information.
Monica Michelle is joined by author Alexis Kline.
Alexis lives with Dysautonomia.
In this episode, Monica and Alexis discuss:
00:28 - Alexis’s diagnosis & dog
07:18 - Sick teenager road map
10:00 - Alexis’s book & workflow
16:25 - Having an isolated diagnosis
20:50 - Wildlife photography, purchases
The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com
Hosted on Acast. See acast.com/privacy for more information.
Monica Michelle is joined by Kathryn Trueblood.
Kathryn lives with Crohn’s diseaseandGraves disease.
In this episode, Monica and Kathryn discuss:
1:11 - Kathryn and Caretaking
4:55 - Neurological Disease and Vsed
6:22- Dealing with Differing Viewpoints
9:34 - Nursing Home Care
11:54- Emotional Support
17:28 - Making Your Own Choice
21:50 - Catholic-owned Hospitals
29:24 - Resources for Grief
41:00 - Final Thoughts
The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com
Thank you for listening.
Hosted on Acast. See acast.com/privacy for more information.
Ableism comes in all shapes and sizes AND we experience it both internally and externally.
Monica (Explicitly Sick), Eva (Humancare), and Jason (Discomfort Zone) talk about how they have experienced and dealt with ableism personally as well as give advice on what could work for others…plus other stuff around chronic illness and crap :p
TRANSCRIPT HERE (it's not fab, but hopefully it does the job, sorry!)
3 last pieces of advice (1 hour in)
Stay tunes for Ableism - Part 2! (Which will include Dr. Lee)
How have you experienced ableism - internally and externally? Let us know what works for you in our Facebook Group!
Monica and Jason are both seeking your stories on gaslighting. These stories could be a part of a long-form audio story or in Monica's Magazine. Send us an email at contact@invisiblenotbroken.com with a written or oral summary of your story. In the subject line, please write "gaslighting stories" as well as your country of residence.
Hosted on Acast. See acast.com/privacy for more information.
My parents returned from their vacation in Cuba on March 7th. A few days later, my dad developed a cough and fever. His symptoms rapidly progressed. Could it be COVID-19?Follow me on Facebook, Instagram, and TwitterTRANSCRIPTAUDIO DIARY - MARCH 16, 2020So the whole world seems to be freaking out about the coronavirus right now, but there's particularly a lot of stress in my household because we think that my dad has coronavirus.INTROI’m Jason Herterich and this is Discomfort Zone. I hadn’t planned on doing an episode on coronavirus, but unfortunately this story came to me. Today, I’m sharing my family’s story on coronavirus.Jason (right) meeting two members from a long-neck tribe during a jungle trek near Chiang Mai, ThailandAUDIO DIARY CONTINUEDHe got back from Cuba nine days ago and a few days later he got a sore throat. A few days later he starts coughing and has a fever. We isolated him in the basement. My mom and I are sharing the house with him and we both haven't shown any symptoms yet. We both had a little bit of a dry throat but nothing serious. Yeah it's really scary right now. He went in to get tested on Friday and they told us they would get our test results twenty four to forty eight hours later and here is it, over seventy two hours later, we're at seventy five hours later. We have not heard back from them. We're tried calling. Left a message. Nothing yet.So we are just... living in limbo. Yeah... It's kinda scary. We all knew the coronavirus was coming. There were reports a month ago that thirty to seventy percent of Canadians were going to be infected with it but you just don't think that it's going to happen to you. And definitely we didn't think it was going to happen this quickly. Now, my dad's symptoms haven't progressed too much. We don't know for certain that he has it, but it looks that way. He's got a really bad cough. It got worse for many days. It seems to have leveled off. He's got a fever, he's getting sweats and chills at night time and during the day. He doesn't have shortness of breath which is good, but it certainly would seem like he has it.So yeah, there's a lot of uncertainty right now... I'm not used to being in this situation. You know, I've got fibromyalgia, chronic pain, chronic fatigue, a lot of other co-morbid conditions but my parents are the ones that have been worrying about my health. And now I guess I'm getting a peek into their world, what their world has been like for many years. And just the uncertainty of it... the helplessness that you feel. You want to do something but you can't and you have to stay away because I don't want to get it myself. I don't know how it would affect me or my mom and yeah we just want to stay healthy but....Yeah anyways, right now I'm just trying to distract myself, trying to meditate, play guitar. Yeah, self-care right now is the most important thing. My mom and I have just been playing a lot of board games. Trying to keep ourselves occupied.A FEW DAYS LATER*Jason rushing downstairs on crutches*Narration: “Three days after the recording you just heard, I was on a conference call when my Mom interrupted to share some news. I rushed down the stairs after the call to find out what was going on. That clicking sound you’re hearing is my crutch. I recently injured my leg.”View this post on InstagramA post shared by Discomfort Zone Podcast (@dzonepodcast) on Jan 20, 2020 at 7:49am PSTJason: “I'm recording by the way. What's going on?”Mom: “What is going on? After two hours I got through to Public Health. Two hours today on the phone and right away she told me, after she got the okay from dad, that it's negative. The result is negative. He doesn't have coronavirus.”Jason: “So it's just a bad cough?”Mom: “Um no. It's probably or highly likely that it's influenza A.”Jason: “What's influenza A?”Mom: “It's a type of the flu that is not covered by the flu vaccine.”Jason: “So it's just a really bad flu?”Mom: “It's a really bad flu.”Jason: “There was no chance it could be dengue fever? I know you said that's there's a rash with that but is there any.... Because you guys were just in Cuba.”Mom: “We were in Cuba and it sounds like there's some dengue fever but one of the main things, main symptoms is a rash on the thorax, on the chest, which he never had.”Jason: “Okay, so where does that leave us?”Mom: “So it leaves us with probably influenza A which I was just trying to research but a flu, a bad flu can last seven to ten days so it's hopefully that.”Jason: “Okay.”Mom: “He can contact a general physician but there's really no treatment for that either, it's also caused by virus. I think it's very close to the coronavirus in symptoms especially in someone who's sixty five.”Jason: “Okay, so I guess, how do you feel about that? I'm just so shocked by the news I don't know how to react.”Mom: “Well I'm shocked too because we were sure that he had it. He was so sick and the symptoms are very similar so they did say that he should stay in isolation but obviously he's not going to go out and spread this...”Jason: “Yeah, definitely not.”Mom: “...This disease, whatever it is. I should also stay in isolation because I traveled out of the country. It'll be two weeks on Saturday and you don't have to isolate.”Jason: “I don't have to isolate. I need to get the message out because I've told so many people. I think a lot of people, especially the disability media, they are all wondering.”Narration: “I had informed everyone who I had been in recent contact with that I may have exposed them to the virus.”Mom: “O yes yes yes. You can tell them it's not coronavirus.”Jason: “I feel bad. I feel like I incited panic in some people.”Mom: “Well, it was cautious to do. It certainly looked like it but I don't... I just heard that influenza A goes deep into the chest as early as the coronavirus. The flu can still be very, very, very bad for an elderly person. People do die from the regular flu. You know they get respiratory illness and pneumonia but I don't think it's deep in his chest. And he does not have shortness of breath and I guess maybe that comes on quicker with the coronavirus.”Jason: “ Yeah, I guess so. He's going to have to stay isolated for a while but I mean, to me this is very very very positive news.”Mom: “It is good news! It is good news that he doesn't need to get tested again and we don't have to get tested and it's negative. And seeing how we've self-isolated, we shouldn't have gotten coronavirus from anybody else.”Jason: “No, exactly. We're safe. We're safe.”Mom: “So we are safe and you know what we should continue to practice social distancing because, number one we don't want to get it. Number two, I guess there's a chance that you could get the flu from dad, although you've kept your distance so...”Jason: “I mean, we don't have to be as anal about literally cleaning every last inch of the house. I mean still staying super far away”Mom: “All the door knobs and whatnot. Hopefully this will subside, he has not gotten worse in the past couple of days.”Jason: “He's going to want to isolate though because his immune system is going to be much weaker so if he did come into contact with the coronavirus, I think that that would kick his body's ass right now.”Mom: “Yeah, yeah. He needs to rest and get better from whatever this is. It's a lesson that influenza A is just as, it gives you just as bad of symptoms as the coronavirus, almost maybe. It doesn't progress as quickly but the flu is something to be worried about too for people that have disabilities and older people too. Anyone, you know, anyone compromised. Anyway, good news!”Jason: “ Yeah, good news. Is it a consequence that we got the result back the day after Missy Elliot tweeted back her prayers towards dad?”Mom: “Who did?”Jason: “Missy Elliott. You know the famous rapper. Didn't I tell you that?”Mom: “No! I never heard that.”Jason: “Okay, yeah on twitter. I wrote a tweet about dad and how we haven't gotten his results and how he's really sick and she just tweeted back her support. Being like O you know my prayers are with you and your family and I'm sorry you're going through this stressful time.”Mom: “Thank God. Thank her and God.” *Laughs*Jason: *Laughing* “Yeah thank god, thank Missy Elliott.”Embed from Getty ImagesDID WE CELEBRATE PREMATURELY?*DICE BEING ROLLED IN BACKGROUND*Jason: “How's dad doing?”Mom: “About the same. About the same. I don't think he has a fever. He told me when he woke up at four o clock in the morning, he was short of breath.”Jason: “Really?”Mom: “Yeah. He wants to go to the doctor tomorrow.”Jason: “I think that's a good idea.”Mom: “Yeah. Hopefully it's just from phlegm.”*DAD ENTERS SCENE*Mom: “Hi there.”Jason: “Hey, how are you feeling?”Dad: “Worse than yesterday.”Jason: “Yeah? Fuck.”A FEW DAYS LATER…Jason: “Jumping right into it, how are you feeling now?”Dad: “Tired. I would say at the worse I felt, these are all relative numbers because I have nothing to base them on, at worst I was running at 10 to 15% lung capacity. Now I'd say I'm running close to 75% although, I still have (symptoms). My hearing still isn't good, fluid in both ears still. No sign of infection from that, but I'm still weak and the past week or so I've only been able to put on 0.6 pounds, even though I've been eating a lot more.”My dad, a 65-year old white male with a grey mustache and blue eyes wearing a blue vest with a plaid shirt underneathJason: “How much weight did you lose?”Dad: “I lost 14.4 pounds in 11 days. And I don't know if I lost any more because I wasn't weighing myself necessarily after that every day. But when I was done, at 11 days into it, I weighed 178 and now, a week later, I weigh 178.6 this morning.Jason: “Just going to take some time..”Dad: “Yesterday morning I weighed 178.4, so it's not coming on too quick. I'm still battling something.”Jason: “You still are. So we had you quarantined off in the basement. You would come upstairs to the office to eating all of your meals but we were essentially keeping you shuttered off into the basement to keep you quarantined so that mom and I didn't get sick because we thought you had coronavirus the whole time. So we rarely saw you but we heard you coughing, and those cough fits would sound horrendous. They would go on forever. Can you talk about what those symptoms were like?”Dad: “It felt like if I took a breath greater than what did I say? 10, 15% or whatever then I would automatically go into a coughing fit and in a coughing fit, if it was severe enough, you couldn't get air, period. So when you finally got it, you had to breath very shallow to try and regain a bit of oxygen. Cough drops helped. Probably as a result of it or as a result of my sickness, I was so inactive I didn't need too much oxygen because I was sleeping probably 10 to 11 hours, at least, every night, aside from my coughing fits. And then in the daytime, I was sleeping 4 or 5 hours too. The rest of the time, I was just laying down. I wasn't at all active. When I did go upstairs to have meals, strangely enough, I didn't feel winded going up stairs but we had just come back from a holiday where your mother and I got a ton of exercise. A ton of hiking, a ton of dancing, stuff like that. We were snorkeling, we were very active and I guess my muscles were in good shape at that point.”Jason: “When you were at your sickest downstairs, we all thought it was coronavirus and we just saw you get sicker and sicker by the day. What was going through your mind at that point? What was your biggest worry?”Dad: “The one weak period I was wondering if I was going to see my grandchildren. I knew that this was getting serious. Your grandmother (mom’s side) had a bad fever, something similar to what I had and on day 10 her organs shut down and she died. She was younger than me so my fear was leaving everybody.”Jason: “Yeah, honestly. We were incredibly scared during that period.”Dad: “Yeah and unfortunately, the way the medical system is, you can't get medical help right now unless you're actually dying.”Jason: “There's really not much you can do. It's like we're all totally helpless.”Dad: “Fortunately you guys kept feeding me, I couldn't eat much, but you got me what I needed. And I realized it's up to me so once I got the antibiotics and started Tylenol and I guess things improved and I thought well maybe I can turn this around but as late as a week ago yesterday, I wasn't sure.”Jason: “How did you feel when you received that negative test result?”Dad: “Well.. I guess I was surprised because I had so many symptoms of it but it didn't change anything. I was still really sick and I thought afterward, this is a false negative. And I still think that's a possibility, on the other hand I had a flu shot so I don't think it was the common flu but who knows, it could've been. I didn't have all the symptoms of dengue fever, I don't know what all the symptoms of zika are, but I could've had another tropical flu of some sort, who knows.”Jason: “You've had a very strong immune system over the years. Anytime you've gotten sick, you've bounced back pretty quickly.”Dad: “Yeah. I've never been this sick in my life.”Jason: “We thought we were going to have to take you to the hospital and eventually get you on a ventilator. We didn't really know.”Dad: “At some point, there was one night where I thought I should call Diane because I can't breath but it came back. And as you can hear, it's not right yet.”Jason: “Yeah, your voice hasn't fully returned.”Dad: “No and I can't hear properly, although I don't think I have an ear infection because I have no pain but my ears are both still full of fluid. Sometimes when you try to pop your ears, you pinch your nose and you blow a little bit, well when I was doing that a week ago, it was like explosions in my ears, they were that loud. Now it's still loud in one ear but not quite as loud. But again, if mom talks quietly I can't hear her, I just hear mumbling.”Jason: “Now that your health is returning and we're presuming you're going to make a quick recovery. It might take a couple of weeks or months to get all your strength back and everything. Now we're adjusting to this new norm all of a sudden, being in this pandemic, what else is on your mind? Is there anything else that you're worried about now?”Dad: “Well, I'm worried about the condition of my parents, if they were to get this disease, that they would not qualify for ventilators.CALLING GRANDMA*Phone ringing*Omi: Hello?Jason: Hey Omi it’s JasonIn Episode 4: My grandma shares her thoughts on toilet paper hoarding and wisdom from World War 2 🚽😲 * Link to the full episode is in my bio! * * * * * #applepodcast #podcastinglife #podcastersofig #podcastproducer #notalldisabilitiesarevisibleOmi: Hi Jason!Jason: Hi, how are you doing?Omi: OK, just dusting, cleaning, whatever hahaJason: Yeah.Omi: Yeah. What’s up with you?Jason: Not too much, just spending time here at home…this is going to be the new norm for a bitOmi: I think everyone is scared, but from what Werner says it’s worse. Yesterday morning, he went to his groceries he goes at 7 o’clock in the morning and there’s usually no one there. Yesterday, the parking lot was half full. He went to the grocery store, there was no cheese, no eggs, no toilet paper! Can you believe that?Jason: Yeah. Everybody is stocking up. Toilet paper…
Full show notes at the publisherJust going to include the transcript this week...Monica: [00:00:26] Oh my gosh. It's been forever since we've gotten to talk. IJackie: [00:00:30] think about a year, actually. No.Monica: [00:00:34] So you're sheltering in place in Arizona. So you're back home. Is thatJackie: [00:00:39] I'm actually, I was back home. I'm from Jersey, Eric. I grew up in Jersey rather, but I came here last Wednesday. My aunts out here.Yeah. Just, you know how it is. Families spend too much time with family and it's just too much, too much of anything. It's like, It's not a good thing.Monica: [00:01:00] I feel really lucky that I have not, not gotten into the frat letters of being sick of my family yet, but it's not, I mean, I'm the adult in the family, so that makes it easier when you're the one in charge.Jackie: [00:01:13] Definitely. Yeah. Yeah.Monica: [00:01:16] So we decided not to start on anything light on our first interview back. Um, You came to me with a really great topic that I couldn't resist covering, but uh, definitely not going to be late. So I might end up crying.Jackie: [00:01:34] And then yeah,Monica: [00:01:36] the emotional I specifically did not wear mascara.Jackie: [00:01:41] Me either for that reason, no laziness or anything. I mean,Monica: [00:01:49] partly laziness, but definitely I did not want to be reckoning. Um, so we're doing, um, sexual assault is the topic of theJackie: [00:01:58] day and also how it can impact, I guess like the repercussions of sexual assaults. Yeah. Yeah.Monica: [00:02:10] Yeah. It's like with both of our disorders, that's one of the, the things that they say can not necessarily cause, but definitely they see a aligned through us with fibromyalgia.They have a tremendous amount of people who have had sexual assault as childrenJackie: [00:02:26] it's through any sickness. I think the more I learn about health, like, you know, psychological, physical, they're both. So, um, Intertwined. And I just wish our society was more educated about everything. That's, that's useful, you know, like this is such useful information and we don't talk about it.Um, so that's why I wanted to talk about this topic because I feel like there's definitely a gap in terms of yeah. The, I guess, education or the information that's easily accessible to. The general population about this topic, um, and about the repercussions, the negative repercussions of sexual assault specifically.Um, and hopefully I feel like if, I mean, maybe not, but hopefully I felt like if, you know, education tends to tends to lead to progress, um, and. I was kind of putting my acting hat on and thinking about, um, any of the perpetrators of, you know, in any of these scenarios and maybe thinking that they. Don't have a full grasp of, you know, the act that they're partaking in.And maybe this was my hope of, um, maybe if they did, and they were a bit more informed than they would think twice about acting on it. You know what I mean? Like there is a lot of ignorance in any kind of criminal activity or, um, and I don't, I mean, I was just trying to be hopeful and thinking. And that way.Cause like, cause people, I feel like you don't understand it unless it's something that you've gone through. And then if you start reading about, um, if you start reading about any kind of health book, probably it'll touch on the subject of sexual assault, just because it is so ingrained in every illness, unfortunately.Um, so yeah, I feel like I'm, I'm, uh, I hope I'm making sense, but.That was just my hope.Monica: [00:04:49] It's a beautiful hope. I love the, I love that idea. I I'm a little, um, well first I just want to say if this is something that you're experiencing currently right now, or if you need past help, we do have, um, if you should go to show notes at the very top, I'm going to have the number for rain.And then also, um, of course, like, I don't know about you, Jackie, but I certainly had some. Some very dark, suicidal tendencies, uh, during those times. So I will also have the suicide support numbers up the very top. So if you are in need of help or if at any point, this is like, you know, like trauma is like grief.It's these like huge waves that come up and they pull you under for a long time and then they get further apart. But there are some sneaky ass undertows that just come up with trauma and grief that just. Unexpectedly pull you. So if you are feeling those polls, please, I will have things in the show notes we're at the very top.Uh, the only thing that like, I, I would love to hope that too, because so much of our media is, um, I don't wanna say romanticizing, but sexualizing sexual assault. Like if you see sexual assault on a TV show, it's, it's always done pretty like weirdly pretty. And it's like these, this pushes that it's not, it's not that,Jackie: [00:06:02] um,Monica: [00:06:03] Bad to do to someone.And then you have like, there's that, um, that study that was done, where they talked to men who were catcalling women and the men were like, Hey, they appreciate it. You know, I grabbed them on the ass and then they're like, they knew that the hottest girl in their group and women were like, no, no, no, we don't like it.I'm specifically telling you we don't like it and they're like, no, no, no, you do. So I'm just, I'm always like, you know, I would love to think that if someone hears that this is traumatic, but I think there's so much ingrained in the culture that they don't even believe what we say.Jackie: [00:06:39] Well, yeah. I don't know if you can, I don't know if you can, uh, I mean, I don't know if we're talking about women here or just anyone in general,Monica: [00:06:49] anyone?I think we are absolutely like sexual assault is like anyone on the planet can be, has, you know, it's been touchedJackie: [00:06:59] her catcalling specifically. I know that I had a former boss or, well, probably just because of the scenario former, but we've, we've stayed in touch. Um, a longterm boss who actually has. Kind of said the opposite of what you're saying.Um, just because she likes the attention of being catcalled and she doesn't look at it in a negative light, however, you know, the topic of sexual abuse or anything, of course. Um, but I don't think there is. Yeah, I don't think there is a, a pro with being abused andMonica: [00:07:38] catcalled, like my biggest trauma and not biggest drama, but like the trauma that I can remember first is being 12 and walking down the street and having grown men yell what they want to do to me as I was walking.And I feel like cat calling, you know, okay. If someone likes that, Don't don't make that. So like everyone has to deal with that shit. Cause that's, um, no one who's cat calling thinks you're going to get a date or, you know, a partner this like that is the specifically like a violent act to make people feel unsafe, being out like that.That made me feel so unsafe, walking anywhere, being on a street anywhere, it would happen all the time. When I was growing up like walking anywhere, it was like, Terrifying because of the very viralJackie: [00:08:23] things. That'd be shouted. I'm sorry to hear that. Um, yeah, I can definitely make it can definitely make you uncomfortable.Um, Absolutely. I don't understand why people, anytime, anyone just assumes that they have the power to like interrupt your day. You know, like it's, you're essentially like raping our time just by assuming that w you know, we have to engage in this behavior nearly trying to walk down the street. Um, That's how I feel about it sometimes.Um, I can see her her perspective when it's not, when it's a little bit more innocent and not, um, but maybe that's where the confusion lies. Like if for any attack or I guess if, if that's the word to use, if there are scenarios where people are seeing. Yeah, a positive reactions to that kind of attention and maybe, um, amplifies, you know, I mean, It doesn't make it.Okay. But, um, I'm trying to get a grasp of understanding,Monica: [00:09:34] but that's the thing is they're all trying to get a grasp and we're not a high of mind, like, you know, the owners of ovaries, Andries the test owners of testicles. Like none of us are a high of mind. We all have. Have different things, but you made a great point about like, what do we owe, like, do I owe someone my time?Do I owe someone my attention? Just because I'm sitting by myself or because I was walking by myself, like, do I owe that? You know, do you have the right to like insert yourself into someone else's life?Jackie: [00:10:04] And even now I feel like that. Well, right now, that's probably happening less in a physical sense, just because of the state of the world right now.Um, you know, everyone's just out less, especially in New York or if you're like catcalling happens the most are cities and things like that. But because of the age of the digital age and social media that happens or similar events like that happen, um, Via social media and via Instagram, via Facebook and all these things.Um, especially the more visible you are. Like I recently have been gaining, are there more fans or just like a stronger engagement with my fans online, um, which is overall positive, but it has been very frustrating because I've had to deal with. I guess we could kind of, we could kind of call it. Um, it's a kin to cackling really.It's like social media catcalling, you know? Um, and it's really frustrating, actually. It's very, very frustrating. It's really hurtful and angering. Um, like I'll have, I'll have a couple of guys. Yeah. I'll have people send me like Dick pics or like ask me for nude photos. I had somebody. Texted me an entirely new photo.And I'm like, how did this person get my number that was last week? And it'sMonica: [00:11:33] scary because you can get your number. They can get other information about you.Jackie: [00:11:37] It's really scary. I mean, I blocked them and I blocked everybody else who was treating me with like that kind of disrespect. That's just blatant disrespect.I don't, there's really nothing else to say about that, but. It's just sad. I feel like even though this is not a gender specific issue, it definitely stems from a lot of the way that our society does you gender, because it is more female centric typically. Um, I can't speak for. Thou GBTQ community, um, or really everyone as a whole.But I think statistically, it is, I mean, you and I were just talkingMonica: [00:12:17] about our personal experiences and our personal feelings. I mean, that's the, anybody's listening to this. Like that's, that's literally, all we're talking about right now is how we personally feel, because I can't speak forJackie: [00:12:26] anyone else.Yeah. I've personally been trying to vet to be more of an advocate. Um, whenever these situations come up, Just because I've, I'm confused, you know? Um, I th I think I posted about it. I mean, I shared it with some friends just because I had to get some kind of emotional support after a situation like that.Um, especially during a time, like now, when everyone is everyone's mental health for the most part has been more effected too. So we're all a little bit more vulnerable and like, we just don't need that, you know? Um, and it's also the mining. Oh, go ahead. Sorry. Oh, I was saying it's also frustrating for me for if these are my fans.It's like, I feel like I have a responsibility to help educate or to maybe, um, what's the word, I guess like, Act differently on social media, but I don't know, you know what I mean? Like, like, is it false? But I feel like that's what happens in a lot of these. Like, I don't think it is our fault. Um, I have a pretty, I'm not like overtly sexual.There are maybe some more sexualized photos, but I'm not overly sexual or social media. That's no problem for that. A lot of people have, it's like getting shameful for having been on the receiving end of, um, situations like this. Someone once saidMonica: [00:14:02] that, um, a rape is as much to do with sex as hitting someone over the head with a pan is to do with cooking.And I think that, um, that's really true. Like, it's not about how you portray yourself. Like you should be able to walk into a room without a top. And just like men who are able to walk around without a shirt. You shouldn't be treated any differently. Like it is a matter of someone feeling like they should have access to you or that they need toJackie: [00:14:27] checkMonica: [00:14:28] you, that you need to be silenced, or you need to behave in a certain arbitrary way.And that's about control. That's not about you did something wrong that someone wanting to control your space, your words, yourJackie: [00:14:39] image, it's completely about control and power. You know, it's completely about all of that. And that's why, Mmm. But I think we had originally been talking, we were originally talking about talking about eating disorders and addiction rate and all those illnesses STEM from an inability of feeling out of control and an inability, you know, feeling rendered powerless by there are circumstances typically, um, and less about for eating disorders, you know, like what you look like in the mirror or, um, Yeah, it's really, it's all about control.And so that's why they're from my experience. And I have, from what I've read has just been, so, Mmm. They can like easily coexist, I guess, you know, we're yeah. I'm not sure to where to use, but I guess like, I guess, yeah, I think sexual assault can definitely cause. Eating disorder and addiction issues as well.Monica: [00:15:45] I started dieting at eight. I was sexually assaulted when I was five. And I can tell you right now how Lake meshed. Those two things were because I started developing really early. So I wanted to look like my friends who were all skinny and like rulers, they were a little Willow, the wisps. And, um, I felt like they were safer because I got boobs.And then all of a sudden grown men were paying attention to me in a way I was not okay with. And I was still very traumatized for selling, but I didn't have the right words for.Jackie: [00:16:19] So I wasMonica: [00:16:20] trying to make myself into a girl again, into a girl's body again, by restricting my food. And that went all the way through your, like my twenties, I think was when I finally stopped, like restricting my calorie intake.Jackie: [00:16:34] Well, I'm really sorry to hear about that experience. Um, I cannot even imagine like being that young and having to undergo that that's terrifying. Um, Fiona Apple definitely speaks about the same thing. Like exactly what you're saying. And she's naturally not a voluptuous woman. So that's just, it, it really goes to show how, Mmm, I guess how detrimental these situations can be and the intense impact of them, you know?Cause she's, she has naturally more, very lean women. So for someone to. Stop eating in the hopes of becoming less feminine and becoming less of, um, a target then, you know, it's really bad. Yeah.Monica: [00:17:29] And there's a lot that we,Jackie: [00:17:31] we decide.Monica: [00:17:33] Denotes consent from what someone wears that their clothing has more of a say of yes…
Full show notes at the publisher“Take care of yourself, trust yourself, be willing to be misunderstood.”
-Raquel Hellenga
Raquel Hellenga is a Life and Business Coach for entrepreneurs and creatives with chronic illness. Diagnosed with juvenile rheumatoid arthritis as a child, she has had chronic illness for over twenty years. She has an undergraduate degree and Master’s Degree in Organizational Communication and is a proud member of the LGBTQI+ community. Her practice involves working with people one-on-one to help them build sustainable businesses that work with their chronic illnesses, not against them. In this episode, she tells her story learning to accept her chronic illness and how it helped her find her path in life. She discusses the importance of mindset and how you can learn to own your illness and work with it to build the life you want. Her message to fellow spoonies is one of compassion and hope.
Visit: www.raquelhellenga.com
Time Stamps:
4:20 – Her diagnosis of juvenile rheumatoid arthritis
5:35 – How accepting our limitations is the gateway to the business and lives we want
6:58 – The year she was diagnosed
7:16 – How her diagnosis affected her family
8:18 – On her pediatric rheumatologist
9:10 – On bullying by other girls
10:07 – The importance of exercise and chronic illness
10:35 – Her temporary remission in her teens
15:06 – Admitting the long-term nature of her illness in adulthood
15:32 – Her decade of doubling down and fighting the truth of her illness
16:21 – Her work as an adjunct communications professor that led to burnouts and flares
16:55 – The effect of auto-immune disease
17:33 – Her realization that she physically could not continue her current path and how it led to her business
19:45 – Baby Yoda
20:33 – Her career as a Life Coach for chronically ill creatives and entrepreneurs
21:14 – What Hellenga does vs what she doesn’t do in her practice
23:28 – How she helps her clients
25:23 – The importance of being honest with ourselves about how to be successful without being in constant flare
26:51 – Stories of people she’s worked with
28:21 – Denial and chronic illness
28:50 – Admitting chronic illness to take ownership of it
31:03 – Unlearning people-pleasing
32:05 – Advantages of being chronically ill
32:49 – The value of a willingness to be misunderstood
42:25 – Coaches vs consultants
52:50 – The value of taking breaks from personal development
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What is your disorder? *
Thoracic Outlet Syndrome (& IBS, Anxiety)
At what age did your disorder become a daily issue? *
21
Who were you before your illness became debilitating? *
I was ridiculously busy lol! I had just finished my university degree (Bachelor of Fine Arts) and was working full time as a charitable fundraiser. I had also moved from the east to west coast of Canada and had plans to travel and backpack around the world with my previous partner.
What would you do if you were not dealing with your invisible illness? *
I would love to work again haha as lame as that is! After my pain became more chronic, I started running live painting events in Victoria & Vancouver BC. It accommodated the pain since I could mostly work from home, while I was trying to get an accurate diagnosis. As my pain became worse though & I received the TOS diagnosis, I had to make some changes so, I left a job I loved. I also am a painter with arm pain lol the irony is real, so I haven’t been able to make as much art as I’d like to over the past few years. Or be as social as others my age (especially with being sober for health reasons too oy). In the future I would love to maybe do a Masters in Fine Arts, or even become a tattoo artist!!! But it’s mostly up to my body at this point, which is really hard to plan around.
What would you like people to know about your daily life? *
It’s really difficult & chronic pain is painfully consistent. For years I was misdiagnosed and brushed off since my symptoms are invisible. I had so many scans and tests done but they were all normal. I saw countless specialists who said they couldn’t help me, and tried every possible painful treatment with no success. It really felt like I was going to be in pain forever. I had to keep advocating until finally I was diagnosed with a rare illness, but there’s no cure. I felt alone for a really long time and have lost a lot due to illness, so I just want others to know that it’s okay to not be okay! Your pain is 150% valid and just keep trying to take care of yourself the best you can.
What would make living and moving in the world easier for you? *
Less pain in my arms! Thankfully I recently had major surgery which has really helped my symptoms! In the past six months I’ve had both my first ribs removed to alleviate the compression of the nerves and veins that go into my arms. There was no guarantee it would help, but my recovery has actually been really great! Super painful lol but impressively worth it! After years I finally have some relief. Now I just have to focus on continuing to recover and try to regain what I’ve lost while also not overdoing it. Easy right?lol
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I am beyond excited for you to listen to this interview with Emily Guy Birkin. Being sick in any country is expensive. No matter where you are there is time off work and a lowering of energy. A new chronic illness or disability diagnosis can be terrifying for so many reasons but one of them might be something you can control and prepare for, financial.
Emily and I will cover some of the ways to budget with fixed income, tools for what to do if you are still working, and ways to financially protect yourself and your family.
If you would like to know more about Emily please visit her website.
Financial Apps We talked About:
Financial Planning as a caregiver: Estate Lawyer
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Kyros and I have dealt with Chronic pain for years. You can listen to either of our episodes to hear about Kyros's Morton's neuroma and Monica Michelle's fibromyalgia, POTS, and Ehlers Danlos
Some People Still Need Opioids
Even in legal weed states, parents who consume pot can still lose custody of their kids
Medical Marijuana Rub (If you live in a medical marijuana state. If not please contact your congressperson relentlessly).
A Better Pain Scale because you know after this chronic pain podcast you need a laugh.
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