Living with Long COVID: Diagnosis, Hope, and Acceptance: Ally
Ally - Bio
Ally is a young adult who has been living with Long Covid and subsequent diagnoses of POTS and ME/CFS since her one Covid infection during college in 2021.
Her background in clinical research, passion for helping others, and newfound experience with invisible illness have led her to the health startup Turnto, where she's helping to build an app for the Long Covid community and eventually other health conditions.
Contact Links:
Instagram: @livinglongcovid
Summary:
In this episode, I'm joined by Ally, who shares her firsthand experience with long COVID. Since her diagnosis, Ally has faced numerous challenges, from persistent symptoms that just won’t go away to major life changes that have reshaped her daily routine and long-term plans. We talk about the impact of long COVID on her life, including using a wheelchair, not being able to work full-time, and the ways she's had to adapt to her environment and expectations.
Despite these hardships, Ally brings an incredible amount of positivity to our conversation. She talks about finding hope and acceptance in her new reality, and how these feelings have guided her through her toughest moments. It’s a straightforward and impactful discussion about living with a condition that's still largely misunderstood.
Takeaways:
Understand Long COVID: Gain a deeper understanding of long COVID from someone who lives with it every day.
Learn about Resilience: Hear how Ally copes with significant life changes and what keeps her moving forward.
Discover the Power of Positivity: Ally’s approach to maintaining a positive outlook despite her challenges can inspire anyone facing adversity.
Explore Acceptance: Learn how acceptance can play a crucial role in managing chronic health conditions.
Get Motivated by Community Support: Find out how connecting with others has helped Ally manage her symptoms and feel less alone.
Definition, Resources and Example Accommodations:
Long-COVID
Definition: Long COVID, also known as post-acute sequelae of SARS-CoV-2 infection (PASC), refers to a range of symptoms that continue for weeks or months beyond the initial recovery period from COVID-19. These symptoms can vary widely in severity and type, impacting different systems in the body. Common symptoms include fatigue, difficulty breathing, joint pain, chest pain, cognitive impairments often referred to as "brain fog," mood changes, and many more. The condition can affect anyone who has had COVID-19, regardless of how mild or severe their initial infection was.
Online Resource for Long COVID:
The Centers for Disease Control and Prevention (CDC) provides comprehensive information on Long COVID, including symptoms, treatment options, and current research. It's a valuable resource for individuals seeking to understand more about the condition and find support. You can access this information at CDC's Post-COVID Conditions.
Example of School Accommodations:
Flexible Scheduling: Allowing students to have flexible deadlines and extended time for assignments and tests to accommodate fluctuating symptoms like fatigue and cognitive impairments.
Remote Learning Options: Providing options to attend classes virtually when physical attendance is challenging due to mobility issues or fatigue.
Rest Periods: Permitting breaks during the day for students who experience fatigue, allowing them to rest and manage their energy levels effectively.
Note-Taking Assistance: Providing a note-taker or access to lecture recordings to help students who suffer from cognitive symptoms like brain fog.
Example Workplace Accommodations:
Flexible Work Hours or Remote Work: Allowing employees to work from home or have flexible working hours to manage symptoms better and attend healthcare appointments.
Part-Time Schedules: Offering part-time work schedules or job-sharing arrangements to accommodate reduced energy levels and increased medical needs.
Physical Workspace Adjustments: Modifying the physical workspace, such as providing more ergonomic office equipment or closer parking spots, to help those with physical symptoms like joint pain or fatigue.
Breaks for Rest: Implementing more frequent or longer breaks during the workday to help employees manage fatigue and other symptoms.
Chapters:
00:00:00 Living With Long COVID
00:04:31 Long COVID Impact
00:10:59 Navigating Chronic Illness and Self-Worth
00:23:22 Power of Sharing Health Experiences
00:32:28 Importance of Self-Advocacy for Invisible Conditions
Transcript
Ally 00:00
When symptoms are invisible, the only thing people can go off of is how well you verbalize your symptoms. So if I'm not doing a great job of verbalizing how I'm feeling, then nobody's going to know that I'm having a terrible day of pain and fatigue and sensitivity and all these things and sensitivity and all these things. So I think that's been difficult. It's like a lot of pressure on me to, you know, verbalize everything that I'm experiencing, which I'm a pretty quiet, introverted person, at least for that. So that's been like a big change for me.
Tim Reitsma 00:37
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01:26
You wake up not feeling well. So you take a COVID test and it's positive and you think it'll pass after a few days off of school and work, but it doesn't. The symptoms keep going on and on. What would you do? Maybe this is you, or you know someone who fits this description. Hey, tim here, and thanks for tuning into another episode of the Invisible Condition podcast, where we talk about advocacy and unusually normal things, the conditions, diseases and illnesses we live with. We will end the stigma of invisible conditions by empowering voices, and today's voice is brought to us by Allie. Allie shares her experience with long COVID and how it has impacted her life. We talk about the challenges of diagnosing long COVID due to the wide range of symptoms associated with it, and she shares her own diagnosis story and how her symptoms have progressed over time. Allie has seen significant changes in her life, including her inability to work full time, to the use of a wheelchair and having to move back in with her parents. Despite these challenges, allie maintains a positive outlook and emphasizes the importance of finding a balance between hope and acceptance.
02:35
Have a listen. We're just going to jump right into it. Allie, you have a couple diagnoses. We're just going to jump right into it. Allie, you have a couple of diagnoses, one of them being long COVID. Can you talk to me about what? Long?
Ally 02:57
COVID is your diagnosis story, how this all came about for you general definition long COVID is if you had a COVID infection and then you have lingering or new symptoms 12 weeks still after your COVID infection. That's kind of what, like the CDC and the WHO have adopted as their definition of long COVID, but I feel like it's really just grown into a whole like bigger beast than that, because there have been studies that have shown there's 200 different symptoms that are associated with long COVID, which makes it really really hard to diagnose someone with long COVID because they could have any possible health issue. But basically, in order to get a diagnosis of long COVID, you just have to try and rule out every other possible issue or condition and then they kind of land with oh you just had a COVID infection, it must be long COVID. And I think for some people like me, it's pretty obvious where it's like COVID infection and then just issues right off the bat from there, and then for some other people it takes a little bit longer for them to realize. Wait, this weird thing has been happening since I got COVID, so it's a super wide range of what people are experiencing, so it's very hard to come to one specific thing right now. Specific thing right now. But yeah, my diagnosis was well.
04:31
My long COVID story begins before my diagnosis because I had COVID in 2021. It was my senior year of college. My roommate tested positive. So we were like, oh crap, we have to go get tested. Tested positive, even bigger oh crap. Like now I have to figure out what to do, basically just for the next 10 days of like can't go to class, can't go to work, can't see my friends, whatever. But we're thinking, okay, 10 days and then back to life as normal. Like, honestly, kind of like, you get out of class free card for 10 days. Um, which I is so thinking about. Like the way I thought about it back then versus now. I'm just like, oh my God, were we so naive at the time? But, yeah, 10 days, get out of the class free pass.
05:11
Basically just felt like a mild cold and then, after my 10 days ended, I didn't really didn't really have any symptoms go away, kept having fatigue, shortness of breath, um, like lightheadedness and I got this really bad cough. I go to the doctor. They're like, oh you, you maybe have bronchitis. Okay, I get steroids for bronchitis. They don't work. I get stronger steroids for bronchitis. Those work. So we're like, okay, cool, bronchitis is gone back on track. The symptoms still don't go away, still have fatigue, still have breathlessness, still have lightheadedness and those have not gone away to this day. By the way, those have been the big three that have never left me. But ever since then it's kind of just been slowly adding symptoms, some symptoms getting worse, some symptoms getting better. Some have phases where I'll have, like this symptoms really bad, and then all of a sudden I'm like cool, no more of this symptom. But it's just like a crazy roller coaster of experiencing symptoms. And yeah, I don't know, it's just been a long two years.
Tim Reitsma 06:48
I can imagine and yeah, I don't know and it just progressively got worse and worse and worse to where you are today and this is now your new normal. Talk to us a little bit about your life before and now and how this diagnosis has impacted you.
Ally 07:02
Yeah, it's very different now versus before my COVID infection. I'd say before COVID I was, you know, college student, full-time course load, also working a part-time job, also working in a research lab, also going out with my friends on the weekends, and actually that fall that I got COVID. Covid I was training for my first like half marathon and then plans to do full marathon. Um, so I think I was also like on an intramural sports team and like the month before I had gone on like a hiking trip with my friends in the mountains, like it was just like the most active social college life you could think of, basically. And then COVID hits a few months later, like symptoms prevent me from exercising. A few months later, symptoms prevent me from like going to all my classes.
07:58
A few months later I actually graduate and start a full-time job and then I worked this job for a year and a half basically until my symptoms prevent me from being able to do that.
08:13
So then we get to where we are now, where, like not able to work full-time, so I'm actually just doing like part-time, remote work as I can and, yeah, not able to exercise, not able to walk long distances, so I use a wheelchair to pretty much like anytime I go outside of the house. I have like a wheelchair. If I'm going out with my friends and family, I'll have them push me around, and then if I just want to like get out of the house and go on a walk or like nearby grocery store, whatever, I have a motorized scooter, um that I take around, which is really nice for like a little bit of independence once in a while, um. But yeah, I had to like get rid of my apartment and then move back in with my parents, since I obviously didn't have a job and no longer had an income to pay apartment rent. So, yeah, life is very different now. A job and no longer have an income to pay apartment rent. So, yeah, life is very different now.
Tim Reitsma 09:10
It is. And yet you know, we've connected a few times now and you're so full of life, You've got just an amazing personality and outlook on life and smiling personality and outlook on life and smiling and is is. Is that how?
Ally 09:36
you've chosen to now like, hey, this is who I am, and so so what now? Yeah, I think people with long covet at least this is my personal opinion that we're in a very unique situation where nobody knows what's going to happen, kind of. And so there are people with long COVID who, like, have just direct organ damage from like a severe infection and then they fix that and then things look really great for them and it's like okay, I'm recovering. There are some people who develop more like chronic seeming illnesses where it's like I have no idea if you will ever recover technically, um, and so there's this whole wide range, obviously, if people experience different things, but I think overall, we are each having to find our own balance of like, hope and optimism, of like I will recover and get back to like somewhat resembling the life that I want to want to have, versus accepting.
10:37
You know, these are my abilities right now. I need to give my body time to healing, to be patient, need to just work with like what I have right now and just rest as much as I can, because you know that's what my body time to heal. I need to be patient. I need to just work with like what I have right now and just rest as much as I can, because you know that's what my body really needs. So it's just, it's a very like fine line between hope and acceptance and that's one of the biggest things I think has shifted for me. Like the first year or year and a half, I was just kind of trying to like, honestly, I was listening to all my doctors who were telling me just wait, and this will go away soon and things will get better, and just keep going on with your life and wait for it to go away.
11:16
And I'm like you know what the doctors are probably right, like I'm just gonna keep doing my thing, wait for this to go away. And then, like a year and a half into it, I started realizing wait, they don't know what they're talking about. Like I end up with two new chronic illness diagnoses at like the year and a half two year point and I'm like maybe the doctors are wrong. Actually, maybe I should not just be pushing through all of these symptoms that are making my life terrible and maybe I just need to take a breather and like let my body chill. So that's where we're at now and like let my body chill.
Tim Reitsma 11:54
So that's where we're at now. It's so hard. What you say resonates with me, and I know it's going to resonate with our listeners too, is just that word patience. Man, it's so hard to have patience. You know like. You're diagnosed with long COVID, you've now been diagnosed with POTS and MECFS, you know chronic fatigue syndrome, and yet that those words that you used is that hope and that acceptance. What does it look like? I'm curious. You know I'm not the most patient person. How has patience showed up for you, or maybe not shown up for you?
Ally 12:34
I think patience has forced its way into my life.
12:38
I think I was really fighting patience for, like I said, the first half of this journey, and then I think somewhere the flip switched or the switch flipped and I was like, okay, the only way that I'm going to like get through this and the only way that I'm going to be able to let my body start recovering is to do that, to listen to it, to be patient.
13:06
And it's just taken a lot of reframing my mindset, I guess, a lot of reevaluating what my self-worth is, what productivity should look like for me, because working, a full-time job, has always been my idea of like a productive, like life, and so that's had to change a lot, and I think patience has had to come out a bit with that. In terms of like I am forced to not work, which I think also people don't really understand when you have an illness that prevents you from working stand, when you have an illness that prevents you from working. I think I've seen a lot of people on the internet being like you know, oh my gosh, like they just want disability money or like they just want government money, and like they're just being lazy, and it's like I am trying so hard to be patient and not push my body like through this um, and I would literally do anything to be able to have the body that can work a full-time job. So I think I just think you can relate to that a lot also absolutely, it's like that.
Tim Reitsma 14:21
That word discrimination just really comes up, and and it really is. It's disability discrimination where, hey, ali, but you look fine. What do you mean? You can't work a full-time job, and I've heard it, I've dealt with it. I was at one point in my early years, living with Crohn's, forced back to work into a job that I was working, a labor job, a unionized job, and I was recovering from a big flare and I was told, oh, you need to go back to work. And I knew from my body was like I can't do this work.
15:00
I lasted about four hours and my supervisor's like we got to get you out of here, like you are going to cause an accident. And so they advocated on my behalf to get me back on disability, because when it's not visible, it's challenging, and I want to talk a little bit about that, especially living with these diagnoses. What have you experienced? Have you experienced those discriminations, that ignorance, those big nasty words in your life?
Ally 15:34
I think I've been lucky to not experience a lot of discrimination from a malicious intent. I haven't really had people saying any nasty things to me or things like that. I think it's more just that people genuinely don't understand, and so I'm put in a position to, you know, try and explain to them, like, what my situation is, what my symptoms are. But when symptoms are invisible, the only thing people can go off of is how well you verbalize your symptoms. So if, like, I'm not doing a great job of verbalizing how I'm feeling, then nobody's gonna know that I'm having a terrible day of pain and fatigue and sensitivity and all these things. So I think that's been difficult. It's like a lot of pressure on me to, you know, verbalize everything that I'm experiencing, which I'm a pretty like quiet, introverted person, believe it or not. So that's been like a big change for me, um.
16:39
But I think also one thing that's interesting is when I use my like wheelchair, it kind of turns from an invisible condition to a visible one, because I'm in a wheelchair and people are like well, what's wrong with you? Are you in a wheelchair? Um, so when I use my wheelchair, I have gotten questions from random strangers on the street, um, or like the people pushing me in the airport that are like oh, are you injured? Oh, what happened? Oh, what's wrong with you? Uh, so you know that's never the best time, but I also, like I think a lot of people have different opinions, but for me, like I really don't think any of these people are being malicious, I think that they're just like curious. So it's sometimes like a good opportunity to be like oh, I have long COVID, and it makes it really hard to walk long distances. And sometimes, if I'm not in the mood, then I'm like you know what? It's not your business. Sometimes it's just like no, we're not doing this.
17:43
But, sometimes I'm like, okay, this would be a nice moment, because this person probably has no idea what long COVID really means, so I don't know. It's both.
Tim Reitsma 17:50
You and I share the same outlook there. I I've said before as well is I don't believe people have a malicious intent. Uh, I think we have an opportunity to educate if you feel like it. Right, like you said, yeah, maybe there's an opportunity to educate someone, but maybe there's an opportunity to just say you know what? It's all good, do you really?
18:14
want to know, why do you want to know? And I think it's an opportunity for people who want to ask, especially when it is visible and now it triggers a different emotion in people and to general I'm generalizing here but even for me it's like, oh, what's wrong with that person? You know what's going on. And then I have to ask well, do I genuinely want to know, and why do I want to know?
18:41
And if it's just to serve myself, for whatever reason, maybe I don't need to ask, and so I think that's where we need to educate others is why are you asking? Do you really want to know? Because if you really do, I'm happy to share, I'm happy to help. I haven't walked with a cane for a few years now. I live with arthritis, and when it gets really bad, it only affects my left knee. Don't know why, my doctors don't know why, but I've experienced that as well is when it becomes visible. Well, why are you walking with a cane? Do you really need that? And um, so I I hear you in that. You said something earlier. You used the words self-worth and I'm curious about that.
Ally 19:42
what does that look like for you?
19:46
Who I am has changed, because it used to be.
19:50
I used to be like the biggest perfectionist, like very school driven, like me to do on school, like doing research, like doing all of these things, to be like good student, like just all of these things that I thought were like what were important and what made me who I am.
20:11
And then now, if I'm not able to do these things, I have to like figure out wait, I need like intrinsic qualities that are actually important to who I am, not just like what an ability is that I can do. So I think that I've been thinking a lot more about like I'm a good person, I'm a good friend, like I'm a good family member. These are like the hobbies that I enjoy for no other purpose than just being happy and they're fun, just like things like that that are much more like qualitative qualities of life instead of like quantitative markers that I was checking of. Like volunteer hours, research hours apply to grad school, blah, blah, blah which, by the way, not applying to grad school. That was the plan, but COVID changed that. So another example of outlook has kind of changed on what's important.
Tim Reitsma 21:06
You finished. You're doing your undergrad, you're doing a lot of research, you're doing some clinical research and again, when we first connected, you were telling me about the research and using a lot of words that went straight over my head, but I was so fascinated. You're so passionate about it, and yet you found yourself in a pretty cool job with a cool company. And how did that all come about?
Ally 21:28
Oh my gosh, yeah, I feel so, so lucky. So when I decided that I'm going to have to leave my full-time job Saturday, I was like I can't, I just cannot do this anymore. I was crashing every night, crashing on weekends, taking days off work to crash from the work days. It was just super bad. So I finally I'm like, okay, full-time job no more.
21:55
Um, the people who are starting this health startup reach out to me and they're like, uh, hey, we see that you're like really active in the long COVID space and like you seem really like connected. You have a great like I don't know, I don't remember what they said. They liked me, um, and they were like we are building this thing for long COVID, do you want to help us? And I was like, uh, absolutely. This could not be better timing for me right now because I need a remote, part-time income situation. And so it turns out they're building an app for long covid that's gonna have like resources, research news, like community insights all in one place. And they had already built the app for their first condition cerebral palsy, because the founder, jess, she, has two kids with CP and so she.
22:50
So they built this amazing community in the CP world and they're like we need this app because patients are just being left in the dust to figure things out for themselves. And they were like doing research. And they're like wait, we have a really big issue with long COVID. Like same thing Patients are just left to try and do everything themselves. Which could not be more true, because all of our doctors are like we patients are just left to try and do everything themselves. Which could not be more true, because all of our doctors are like we don't know anything about this, um.
23:16
So anyways, yeah, it's such a perfect opportunity because now I'm helping them build this app for long, covid. And yeah, I'm so excited because I'm thinking about, like, if I was, even now, I'm really excited to use it for myself. But if I was earlier in this journey and I was like experiencing these symptoms for the first time and, like you, google it and there's really not a lot of things google can tell you um, so going to like this app and being like, why am I having random numbness and tingling? And then someone else being like, oh, me too, it might be like dysautonomia. And then you go look that up. And then it's like it might be like dysautonomia. And then you go look that up and then it's like, oh my gosh, I have dysautonomia, so I just know it will be so helpful for so many people. So, yeah, I'm super pumped to be working on it.
Tim Reitsma 24:03
That's amazing and it reminds me of a story. He's going to be an upcoming , so I won't give it away what we're going to talk about, because it's a fascinating condition I think he'd allow me to use that word, but he'd go to his doctor. His doctor was like we don't know what it is, and so he started going online and he found a community online and started sharing about what he's. And it turns out there was thousands of people who are experiencing the same thing and that's where they found he had found a treatment and talked to his doctor about it and has since got the treatment and is feeling so much better.
24:41
So that power of community we talk about yeah, we talk about this often, I talk about it often it's just there's so much power in sharing our story and it takes often a tremendous amount of vulnerability. So, because you have this new job, this part-time job about Long COVID building out a health app, was because you were sharing vocally online. And what made you decide, hey, I want to share my experience Because I know there's people and I've come across a lot of people now who want to share but are afraid afraid of the shame that they feel or they will feel, or potentially feel, the fear of judgment, fear of discrimination, all of that.
Ally 25:29
What made you just say you know what it may or may not come, but I'm just going to share. I think all of those fears are so valid and I still have them sometimes. I think people that even have been sharing their story still have fears of judgment and like is there going to be ramifications from this? And all all those fears are still there. But I started an Instagram account for kind of my long COVID story, basically at my darkest times, um, when I was uh, like probably halfway through the time of like being in my full-time job before I had decided to leave, and like was just crashing like all the time. Also, when I say crashing, it's like stuck in bed, fatigue, pain, can't do anything. That's kind of what I meant by crashing. But yeah, so this is like the deepest, darkest times and I'm just like nobody, like I don't know what's happening to me, nobody knows what's happening to me, like my doctors obviously didn't have any helpful answers, and so I like go on Instagram and like I just search along COVID. I'm like wait, there's like a bunch of people sharing the exact same things that I'm going through, like talking about it, and they have all these other people who are like wait me too. Um, I was just so mind blown that this was a thing I had no idea. And so, after a little while of like stalking all of these accounts and stalking all these people, I was like wait, I should just like make one um so that I can like keep connecting with them.
27:15
So I made an Instagram account like specific for my long COVID story, but I didn't tell anyone in my life. I like was really scared that. You know, this was like something I had never done before and I was like maybe people will like judge me if they see what I'm saying. So I kept it like separate from my real life and it took a while before I like connected it to my real life, my real social media, my real Instagram um, because I yeah, I was like so scared that people were gonna be like I don't know, like just like why is she posting this? Is she just like looking for attention? Like I don't know? I was just scared, um, but now I feel a lot better and I feel less scared because of the amount of community that I've found in this social media online space.
28:21
Hi, like, I was just diagnosed a few months ago and I don't know anyone else in my like real life that's going through this and I found your account and it's been so helpful and, like I have the same story as you, like so many people have messaged you. That which is just so, like that's the whole point. You know, is to like be that resource for people who have come after me who are like wait, I don't know anyone else going through this. Yeah, I don't know, that's how it started.
Tim Reitsma 28:53
Well, stepping out of that fear and I hear you, I feel it with invisible condition as well that I still live in fear. There's days I haven't had a day in a few months, but there's been days where I just want to take the sight down. I just want to erase everything about invisible condition that ties to me, because what if? So, if you think of what if? In that negative sense, but think of it as a well, what if I do do this? What would be the impact?
29:39
So I'm diagnosed with like long COVID in your case, or I'm diagnosed with Crohn's, with like long COVID, you're in your case, or I'm diagnosed with Crohn's. So what now? And it's hard, I mean it's so easy to say and it's it's challenging, but if somebody is listening to this and maybe you're are in that, as Ali said, as you said that dark place, you know. So, what now? What's you have? You have a choice. And if we look at that world, for me, if I look through the world in that, what if? In a negative sense, it's a challenging place and there's days when that happens and I got to respect that. There's also days where, well, what if? What if I record a podcast? What if that impacts one person's life? That's all that matters. So I love that. That was your fuel and that motivation. You know, out of that darkest place and what did your family and friends think and what did they say when you, kind of quote-unquote, came out or came?
Ally 30:42
basically to them on COVID and see them, um, they, a lot of them cried actually, um, because it was a lot of things I wasn't saying to them because they didn't understand and, like I knew from, I knew they could do their best to understand, but they couldn't ever really fully like understand how I felt going through this.
31:09
And so, you know, I like tell them like a lot of things, um, but it's just, it wasn't, you know, the same as talking to someone who's like oh my gosh, I feel the exact same way and I know exactly what you mean. Um, but yeah, I I showed them the Instagram. Probably, like for most people, people, it was like a couple months after I had like had my Instagram account and I was like connecting with other long haulers and I actually showed my like family friends, whoever. I showed people the amount of comments I got on my very first post, like introducing myself, and it was like so many people saying like welcome to the community, like we're all so happy to have you here, like we're all here for you, and, yeah, a lot of them cried.
Tim Reitsma 31:58
Wow, Uh, that just brings emotion to me as well. And, um, just stepping out of that fear, I applaud you. It's scary, as you say. Still scary some days and it seems like you are someone who is out to make a difference in this world, whether it's through Instagram, being public with your story, through working at this health startup and you know as. Look to wrap up there. I always ask people this question about self-advocacy and it's it's a broad word, it's a big word, it's. We can come up with that standard definition.
Ally 32:39
But when you think me, self-advocacy has come from like having the courage to be vulnerable with people because kind of like I said before, like if I don't tell people what I'm experiencing, what I need and like those things, then they will have no idea. And I think I guess that's true for, like most people with invisible conditions is like you are in charge of verbalizing all of the ways that you need, like accommodations or, I think, just things that you need on a daily basis, um, because otherwise people just won't know. And I think that was something that took a very long time and I'm still not the best at like those communications, but I think just gaining more and more courage as time goes on to like share those vulnerabilities, like that's how you will get what you need.
Tim Reitsma 33:43
That's a perfect definition, in my opinion. It's stepping out of that vulnerability and you said it a couple times and I like that. It's verbalizing. I'm just looking at my notes here. We need to verbalize, we need to verbalize your symptoms in order to get that accommodation or in order to help someone understand and for someone who may be listening and is struggling to verbalize any insights or any thoughts that you would like to share directly to them.
Ally 34:12
Definitely practice first on the people that you trust the most, because my best friends they know I started with them and I was like you can just say, like I don't really know what I'm experiencing, but it's bad and it sucks. That's a great place to start and I think just from there, like it's easiest to start with people that you aren't afraid of telling. Like for me it was my best friends, it might be like close family members, like mentors, things like that the closest people to you. Start with them and get, get that practice out of the way so that then when something comes up at work and you're like, oh, I actually like I'm gonna really like need this to change, then if you have that practice, it, hopefully, is a little bit on how to communicate and it's very simple, um, and yet it's very difficult and it involves.
Tim Reitsma 35:15
You know, how are you feeling right now? Just check in with yourself, check in with yourself on what do you need, and you might not know what you need, but I would even then argue that's what you need, right, you need support. You just might not know what you need, but I would even then argue that's what you need, right, you need support. You just don't know what you need. And being able to then clearly articulate that, with sometimes removing that emotion that you're feeling. So, if I need an accommodation, it's hey, this is what I need and this is why I need it. How can you help? This is what I need and this is why I need it. How can you help? And I'll put a link to that in the show notes.
35:49
But I think it's important to practice, to check in with yourself. Why do I need to advocate for myself? Well, like you said, when it's invisible, who's going to advocate for you? And even when it is visible, like when you're in a wheelchair, you still need to advocate for yourself, because it just kind of changes that tone a little bit. The purpose of invisible condition is to end the stigma of invisible conditions. How are we going to do that? What are your thoughts?
Ally 36:21
I think you are doing that one person at a time.
Tim Reitsma 36:27
That wasn't a question to serve me in my pat myself on the back it's true.
Ally 36:32
I think, honestly, just like, the more people talk about things like this, then like, the more other people will have the courage to share themselves and like, like, even through making sharing my story on instagram, I've learned of other people in my real life who actually have conditions that I had no idea but like I just wasn't the person that they went to like I wasn't the health condition expertise person. Um, so, like, now that they're like, oh, you shared, like what you're going through Well, actually I'm going through like something similar and I'm like, oh my gosh, I had no idea. So I just think that, like, if you can get a tiny bit of courage to share with people in your life, I think a lot of other people in your life will also be dealing with invisible things that you just had no idea, but now you're all being comfortable.
Tim Reitsma 37:30
Yeah, move our friendships past. Just talking about the weather and sports and into things that are, you know, deeply meaningful to ourselves and to others, and to talk about the things that make us our normal Ali, there's three words that really stood out in today's conversation Hope, acceptance and patience, and I'm so grateful that our paths crossed and you are here to share your story. If someone wants to connect with you, where's the best place for them to follow along?
Ally 38:01
Yeah, I would love for people to connect with me through my long COVID Instagram account. It's at living long COVID, just one word. But yeah, I would love to and I love connecting with other people who are going through similar things.
Tim Reitsma 38:18
That's perfect, and we'll have all that in the show notes and social posts and all that.
38:25
And so, again, ali, thanks for coming and for those who are listening, if this story resonates with you, if you have your own story invisible condition journey that you'd love to share, please reach out.
38:40
I'm always looking for interesting s on the podcast, but I'm also launching a new piece of content, a written interview series. So, if you have, maybe you're not comfortable sharing on a podcast, but you want to just write down a little bit of your story we have some scripted questions and we'll be posting that. We've got one so far on the website, but maybe by the time somebody's listening to this, there's more. But we're always looking to share more and more stories because, as Ali said, you know, one story at a time is how we're going to end this stigma, and if you like this episode, please subscribe to the podcast, please share it with your friends, your family, your coworkers, your neighbors, strangers, wherever, and if you have the means, please consider donating. We're building this as a nonprofit and so every dollar that is raised goes directly back into the publication of the production of this podcast. But yeah, so with that, ali, again thanks for coming on.
Ally 39:39
Thank you so much for chatting with me. It was a great time.
