POTS & Strategies with Maggie

Struggling with the challenges of invisible disabilities? Join us as Maggie Cavanaugh, a National Certified Counselor living with postural orthostatic tachycardia syndrome (POTS), reveals her transformative journey from an advertising career to becoming a counselor. Diagnosed at just 14, Maggie navigates the complexities of mental health and chronic illness with empathy, sharing her insights on overcoming disparities in income and workplace stigma. Her story unfolds with a heartening look at how the COVID-19 pandemic inspired her to pivot and support those feeling isolated, highlighting the importance of empathy and understanding.

Meet Andy, a remarkable advocate living with multiple invisible disabilities, who demonstrates the power of resilience and self-advocacy. Blindness, deafness, and autoimmune diseases have not stopped Andy from championing the necessity of strength-based, solution-focused strategies both personally and professionally. Their wisdom extends to the role of understanding healthcare providers and the critical support of family and partners. Andy's connection with the Spoonie community underscores the importance of collaborative networks, as they share strategies for empowerment and fostering genuine support systems.

Maggie and Andy shine a light on self-care and community as cornerstones of managing chronic illness. They explore turning self-criticism into self-compassion, setting boundaries, and embracing empowerment. Their stories remind us of the resilience found in authentic connections and the transformative power of understanding and support. As we express gratitude to the Spoonie community, the episode culminates in a tribute to the strength and inspiration drawn from shared experiences, leaving listeners with a sense of belonging and encouragement to cherish their perseverance.

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

Chapters

• 0:00 Navigating Mental Health and Chronic Illness
• 9:42 Empowerment Through Advocacy and Support
• 14:59 Self-Care, Advocacy, and Mental Health Revolution
• 25:50 Empowering Self-Care and Compassion
• 30:45 Appreciation for Spoonie Community

Transcript

Speaker 1: 0:08

Welcome back to my Spoonie Sisters Podcast. Welcome Maggie Cavanaugh, a National Certified Counselor with a passion for helping individuals navigate the complexities of mental health and invisible disabilities. Since beginning her work in the mental health field in 2022, maggie has worked in school and private practice settings, counseling individuals, couples and families through life transitions, trauma and beyond. Since 2012, she has been living with postural orthostatic tachycardia syndrome Most of us know it as POTS, an invisible disability that informs and fuels her commitment to helping others in the chronic illness community find resilience and advocacy in their own journeys. Today we're going to explore Maggie's story, her insights and advice for spoonies who are navigating the intersections of mental health and chronic illness. We are joined with the one and only Andy Byers co-host today. Thank you both for being here. Maggie, how are you today?

Speaker 2: 1:11

I'm doing well. How are you? I am well.

Speaker 1: 1:12

Andy, how are you today? I'm doing well. How are you? I am well. Andy, how are you today?

Speaker 3: 1:15

Fabulous, I am happy to have a pot yawn, so I have a new bestie and we could talk all about it.

Speaker 1: 1:20

I know I was excited and I can't wait to listen to everything you both have to share.

Speaker 3: 1:24

Maggie, can you share a little bit about your journey with pots? How has living with it been for you? How has it shaped your perspective?

Speaker 2: 1:32

Yes, I was diagnosed when I was 14, which I believe is about the average age for someone to be diagnosed with POTS. So it started off one day with me randomly passing out and going to the doctors to see what occurred. It took about four months to get a diagnosis. There was a lot of misdiagnoses. A lot of it's just mental health, it's just your anxiety.

Speaker 2: 1:53

But I have an incredible mom who is a nurse who was like I don't think what she's being told is correct. So she did a lot of research on the symptoms I was having and found a pot specialist out at Johns Hopkins and reached out to this doctor and talked to him about what I was experiencing. She brought it back to the cardiologist and neurologist that I was seeing by me in the Philadelphia area. We finally got a diagnosis of COTS. I think professionally and personally it's definitely affected me and I think at the core it's just given me a lot more empathy. I look at life through a lens of wanting to walk the journey with people through empathy rather than against them through their struggles. I love that, thank you for sharing.

Speaker 3: 2:35

Do you think that your diagnoses inspired you to pursue the career that you pursued?

Speaker 2: 2:42

Interestingly not necessarily In my undergraduate career I actually studied advertising. When I finished I was working at a retirement home. While I was working there, covid hit so we went into lockdown. I was doing event planning advertising when we went into lockdown, the residents were in their rooms, couldn't see family, we couldn't hold events, they were just isolated. I called my boss and was like listen, I really want to be able to do something for them. Can I call and touch base with them? And she was like absolutely, go for it.

Speaker 2: 3:10

I often heard a few themes anxiety, depression, no-transcript, not trying to apply counseling. I hadn't been a counselor yet, but just like being okay, let's explain some of these coping skills and how you can use them when you feel this way. So that's actually what inspired me to get into counseling was once I was laid off from this job because, unfortunately, I had a positive layer passed out, concussed, didn't have enough FMLA to be able to do the PT and OT. I was like you know what? This was almost a blessing in disguise and I was able to go to grad school and start working in this field.

Speaker 3: 4:01

I love that. So you presented some research on the intersections between mental health and invisible disabilities. What were your key takeaways? What did you learn?

Speaker 2: 4:10

Yeah, there's some really interesting takeaways that we can look at. Those with a disability earned a median income in 2021 of $28,438, compared to their non-disabled counterparts, who made $40,948. A huge disparity, right? Research also shows that 88% of employees with a disability chose not to disclose because they were afraid of the stigma and discrimination that would come along with it. This then had repercussions, right? So because of this, there was feelings of lower morale and reduced productivity. Some other statistics that we consider are one in four adults with disabilities 18 to 44, do not have a usual health care provider. One in four adults with disabilities again, 18 to 44 do not have usual health care provider. One in four adults with disabilities again, 18 to 44 have unmet health care needs due to costs in the past year. So, again, just a lot of obstacles. While I'm not implying that people with disabilities are not just as capable as their able-bodied counterparts, there's definitely more obstacles to overcome. This can be both draining, physically and mentally.

Speaker 3: 5:20

I agree. I agree. I didn't know that there was so much of a difference in the sliding pay scale. I knew that there was a difference, I didn't realize that it was so much of a difference. And when you put the statistics out there and, as people listen to this guys, when you guys are listening to this, understand that if it's $28,000, they still got to pay co-pays for medications and all of the things. When I tell you guys, everybody is carrying something, that is what I mean by that. You may not see it. People see me every day and don't think that I look sick, but it doesn't mean that I am not carrying the stress of where is the next co-pay coming from. And that is a really real worry for people that are chronically ill and also invisibly ill.

Speaker 2: 5:58

Yeah, as well as the barrier of having to prove that you're disabled. Right, yeah.

Speaker 1: 6:02

Yep Now. What challenges do individuals with invisible disabilities face when it comes to mental health, and how can counselors or allies provide support?

Speaker 2: 6:14

Oftentimes, whether it's mental health or physical health, we see that again, kind of what I just spoke on is the need to prove that you have a disability. Not all providers have equal education on this. It's not necessarily something that we're taught about in schools. So as mental health counselors, we are required to receive continuing education to keep our license. So really finding someone that has focused on how to support those with disabilities and works with them on building resilience, finding coping skills you know has that background to be able to help those, because when you're having to prove that you have a disability or like you feel someone's not meeting your needs or not hearing you, it makes it a huge barrier to have to overcome.

Speaker 1: 6:58

You are an advocate for Spoonies to prioritize both their mental and their physical health. What kind of advice would you give to someone who is just beginning to advocate for their own needs?

Speaker 2: 7:08

When you're just beginning to advocate for your own needs. Definitely give yourself grace and patience. There absolutely is a learning curve and being able to find your voice and advocate for yourself. One of the biggest things I tell people is find your community, even if it's online. So, for instance, for POTS, there is a Facebook page, both internationally and where I'm located in Pennsylvania.

Speaker 2: 7:32

A lot of times people will post on their providers that really listened to them, heard them advocate and helped meet their needs. Right? So, looking for those providers, people on the flip side say, hey, I went to this doctor and they weren't willing to hear me. They made me continue to prove myself. Or, you know, I knew that this medication works for me because I had it for maybe another provider that I had on a different insurance. But will you possibly provide it? And sometimes providers say not really our thing, I think there's something better out there for you, right? So really knowing and looking for those communities that tell you who has the experience, the knowledge and the empathy to be able to provide that care for you and also knowing that, if you can't advocate for yourself, to look at those health advocacy agencies as well.

Speaker 1: 8:16

I love that. That's a really good tip. What role do you think storytelling plays in building resilience for individuals with chronic illnesses?

Speaker 2: 8:24

Storytelling allows us to build acceptance, which in turn leads to resilience, and it helps us create meaning from our experiences. Once a sense of meaning is built, it helps us provide hope and perspective rather than feeling defeated or overwhelmed. It also helps us express our emotions more regularly. Once we can express our emotions and identify what our emotions are, we can really apply specific coping skills to those emotions, so we can look at adversity faced as something that can be managed with the right tools to in turn reducing feelings of hopelessness and fostering a mindset of agency and control.

Speaker 1: 8:59

Recently, the my Spoonie Sisters got together and we decided to have a conversation about elevator pitches. Do you have an elevator pitch prepared for when you're in a situation that you're being asked about your, your chronic illness, your invisible disability, and what does that look like for?

Speaker 2: 9:16

you Just to clarify, like, are you saying sorry cause this might not be useful? Are you asking like what I say about my own journey, or like what it was?

Speaker 1: 9:25

Or if I were to come up to you in an elevator or anywhere really, and approach you and ask you about your illness. Um, or maybe my phrases, Andy, help me out.

Speaker 3: 9:38

So it is your real quick read because you don't keep explaining it. So for me, I just ripped the bandaid off. Hey, I'm Andy, I'm blind, I'm deaf. One time I met Jesus. I had a whole cardiac arrest. I died for 38 minutes. I have a slew of autoimmune diseases. Here's the one that's bothering me today. So if you were to meet a new doctor and they had never seen your chart, your first five minutes with them when they go, hey, tell me about you. That's your elevator pitch. Do you introduce some dark humor? Do you make it fun for yourself, because you have to keep telling your story.

Speaker 2: 10:13

Thank you, I really appreciate the perspective. So the way I approach my elevator pitch is I want to advocate for myself. So you, as a doctor, need to understand that pause affects every part of your body. So every day, I am facing an uphill battle of making exact choices on what can my spoons be used for like kind of bringing us back to the spoonie thing, right? So I'm making these choices. I need you to know that I've experienced this for 14 years. I know what works for me and what doesn't work for me, and here's what I can tell you works for me. And please listen and please accept that I have done my own research and while you are an expert as well, let's collaborate together.

Speaker 3: 10:53

Yes, I love it. I love it. You go in, no nonsense, right out the gate.

Speaker 2: 10:57

Absolutely no nonsense. I really, even as a counselor, I'm a very strength-based, solution-focused counselor. So what that means is I look at what are the client's strengths and how can we use their past strengths and experiences to come up with a solution that works the best for them, and I really apply that to myself as well.

Speaker 3: 11:13

How do you approach helping couples and families understand and support someone that is dealing with invisible disabilities or chronic illness?

Speaker 2: 11:22

I think that's such a great question because a lot of people don't know how to support someone. They think they do and oftentimes what I'm seeing is that couples, families, they'll do all this research, which is wonderful. I really appreciate that they want to support someone and they do their research. I think that's a good first step, but make sure you're incorporating the person who is dealing with this chronic illness or this disability into the conversation. They're the ones living with it. They're the ones that understand what they need. So bring them into the conversation and ask them like how would you like to be helped? How can I hear you see you validate your experience, right? So, for instance, they're saying, when I go to the doctors, I have a really hard time remembering all the details of how I got here and what I need, and that's my biggest struggle right now.

Speaker 2: 12:06

And let's say they did their research, like this family member, and said, okay, I've learned that sometimes caretakers can come to appointments and be a really great advocate for what you need. Based on that research and what I'm hearing you say you need, can I be that person for you? So really, that collaborative approach of I'm taking you as a person, you knowing what you need, based on some of the stuff I've read, applying it to how you're asking me to use it. That's so good, yeah, and I think, like I said, it's really it has to be so person centered and client centered. I wish sometimes that doctors took that approach and I wish sometimes the doctors took that approach. I think, as counselors, it's our job to take that approach with our clients, to help them advocate and learn that they have to bring their voice to the table.

Speaker 3: 12:44

With POTS awareness growing now you're starting to see more commercials about it, so it's not all in our heads. But with the awareness growing, as a person who lives with POTS, what do you wish people knew more about? What do you think you wish they understood?

Speaker 2: 13:00

I wish that they understood how much it affects every part of your body. It's not just the tachycardia, it's not just the neurological effects. It can affect your bowels, it can affect just so many different things. And people don't see that on a day-to-day basis. So oftentimes I feel like the only time people see my symptoms are when I'm having a flare-up today basis. So oftentimes I feel like the only time people see my symptoms are when I'm having a flare up.

Speaker 2: 13:21

I'm stuck in bed, I'm struggling to even like raise water to my mouth, right Like that's when it's seen. But know that every choice I make throughout the day, every spoon I'm using, is calculated. That can be both mentally and physically draining. There are some days where I can't meet the same expectations that an able-bodied person may have for themselves. So it's not that I'm lazy, it's not that I don't want to do things. I'm working. I might have needed to do laundry that day, I might have needed to wash dishes, and now my energy is starting to be depleted. I might look fine, I may seem fine, but I have to think about how the rest of my day looks. And if I'm meeting clients' needs, I also need to meet my needs as well.

Speaker 1: 14:00

How has connecting with the Spoonie community supported you in your journey and how do you aim to give back to that community?

Speaker 2: 14:07

I think, in connecting with the Spoonie community, it's really been important that I continue to look at research, further my education, to know how I can best support them and meet their needs. It can be something like continuing to speak on podcasts, presenting at conferences, going to events and speaking on whether it's my journey or the things I've seen in clients, things I've read in research. It can also be like something quick, little shout out there's a POTS race or a race to be, pots 5k in Westchester on June 1st, so it could be something like giving back by attending a fundraiser. So looking out for different things that you can do to financially help to spread the word. The voice is already out there. There's so many people that are trying to bolster the voice for those with disabilities, invisible, invisible and I really just want to be part of bolstering it and lifting it up and continuing to spread the message.

Speaker 3: 15:00

What would you say has been your most rewarding moment of your counseling career so far?

Speaker 2: 15:05

It's hard to choose one moment that was the most rewarding for my counseling career because there's so many different wins that clients have, so to pick one is really challenging, I think, because I talked about being a strengths-based, solution-focused counselor. No-transcript talk through things week to week like watching them grow in that way is incredible. But I've seen so many clients who struggle with tough mental health situations work so hard on applying coping skills and you see that week to week progression and I think that's rewarding within itself. You know whether it's an abusive situation or you're dealing with crippling anxiety or crippling depression, and watching people fight for themselves, find their voice, use their own strength. It's something so rewarding to be a part of and to see that journey really go from start to finish.

Speaker 3: 16:19

So I'm the rogue one. I always go rogue with the questions, Potsy to Potsy. I have a question what is your top five? This is in my Pots management toolkit.

Speaker 2: 16:29

I would say self-care number one, trying to find low impact things or low impact energy with high reward, right. So what can I do that won't take away too many spoons but gives me time to recharge? I would say that's number one. Hydrating incredibly important. I try to get like 1.5 liters minimum of water a day. Let's say mental health care super important, you know, going to your own therapy to process some of the stuff that you've dealt with or dealing with, because anxiety for POTS, just many other chronic illnesses and disabilities, can be a trigger for flare-ups. So working through my own mental health is really important. I also think balancing advocating for others and advocating for myself. I think there's that balance that needs to be done, where I'm meeting clients' needs but also meeting my own needs and, lastly, just having patience and grace with myself, because this journey is not necessarily always an easy one, and meeting myself with some self-compassion along the way.

Speaker 1: 17:53

Looking ahead, what are your goals for spreading awareness and creating a lasting impact in the mental health and chronic illness communities?

Speaker 2: 18:00

Continuing to be able to speak out and spread as much knowledge as possible. So, like something I say today, I would love for it to reach someone that was like you know what? I never thought about it from that perspective before. So, continuing to speak at events, conferences, podcasts, being able to get the message out anywhere and everywhere, along with these other great voices, bolstering their voices, bolstering this message, I would say, is my long-term goal, but in the meantime, just trying to take it day by day help clients, meet them where they're at and providing them with that lasting change and those skills that they can use for the rest of their life.

Speaker 1: 18:36

Okay, I have some random questions, but, andy, did you have something first? Well, now, I was about to start asking the random questions. Ooh.

Speaker 3: 18:42

Okay, you want to go first. Yes, on a flare day or go-to self-care exercise, or your go-to self-care activity. And what snack are we eating?

Speaker 2: 18:53

With pods. Eating something salty always helps with trying to stay hydrated. I would say pretzels are my go-to snack, like nice salty pretzels or nice salty chips are always great. And then my go-to self-care activity is laying in bed with my feet up, so being able to get the blood flow returning, really taking time to rest and recover, listening to a good audiobook I could listen to Harry Potter on repeat for years on end and never get bored so really just taking care of myself in the way that I need to and, like I said, allowing myself that grace and patience to just take the day to do that.

Speaker 1: 19:30

Who is your favorite character in the Harry Potter series?

Speaker 2: 19:34

I personally love Hermione Granger. I think that she is so knowledgeable and always tries to use her knowledge to help others. That really speaks to me personally. I love to be like her. I love school. Like grad school is something I miss dearly, I think really just her, because I think she has so many great attributes. I think she's compassionate, I think she's a good friend wanting to help others through her own knowledge, and I think that's why I love her the most.

Speaker 1: 19:59

Now we all have those tasks that we absolutely detest or put off. So what is one task that you always avoid?

Speaker 2: 20:09

if you can't. If I could avoid it forever laundry. But laundry has to get done right. So I find that laundry is draining for me for whatever reason. I don't know if it's like the physical task of picking it up and then like putting it away and then folding it, because with pots like that, up down motion, so if I don't put it in my laundry basket immediately, it's on the floor.

Speaker 3: 20:26

I could test it.

Speaker 2: 20:27

That's so real, that's so real rubbing the shower is another thing. Again that up down motion. I actually do avoid the one. My boyfriend's amazing, he will do it. Anything I can allocate to someone else and say this is a struggle, this is going to cause a flare-up for me and I actually do need to avoid it. Can you do this for me? That's a really good one I.

Speaker 1: 20:46

I avoid up down motions too, and I've never been diagnosed with pots, but for some reason the updown motions always make me lightheaded, and if I can avoid it at all costs, I'm going to avoid it. I hate dusting. Yeah, what about you, andy? What's your one thing you absolutely hate?

Speaker 3: 21:02

So my thing is laundry. But I'm very specific, right, I'm very particular. I can wash clothes all day right. The sorting is therapeutic for me because, you know, I don't like my food to touch, and so the sorting of stuff is therapeutic for me.

Speaker 3: 21:16

Where it becomes the struggle is when it's time to fold the clothes, because my mind is like these clothes aren't warm anymore and now they're going to wrinkle, and then I spiral, so they go right back into the dryer because they have to be the perfect temperature for me to not have to use any more spoons when I want to get dressed. So now, if I think in the tomorrow, if I wanted to wear this, am I then going to have to take it out and iron it? And then it just goes downhill from there and I start counting my spoons from there, or I just put it back in the dryer and then I force myself to fold it. Or ask my daughter you know, hey, can you fold this for me while it's still warm? But the team activities in this household it's.

Speaker 3: 21:55

I don't mind doing dishes, but understand that if I have to now put them away and I'm up down, I'm probably going to end up on the floor where it's going to wipe me out for the rest of the day. The going I love grocery shopping but I like to avoid grocery shopping when there's a lot of people, because the constant spinning and the people going past me really fast with carts messes with me, messes with my pots it's all kinds of weird stuff, I think, but it's definitely the folding of the clothes. I will put that off and put it off. And put it off until someone else says I'll fold them for you.

Speaker 2: 22:24

Now is it okay if I ask both of you a question, Of course. How are you both with your positive self-talk when there's a task you can't do?

Speaker 3: 22:32

So for me, I acknowledge what it is Is the can't that I physically cannot do it, or is the can't that I need to actually approach it from a different perspective? And that has been my life and my chronic illness journey is that my can't, your can't, is not going to be my can't and your you can't do it or you don't do that or not is not going to be my I am, and so I look at it from. For me, is it that I physically am unable to do it Because I've been physically unable to do a lot of things and I'll be okay with that, or did my mind just tell me I can't do it that way, so I can't do it? Can I approach it from a different angle? What I've learned in my journey is that a lot of the things I've had to relearn to do, but learned in my journeys that a lot of the things I've had to relearn to do, but I still get to do the things that I enjoy. I had to learn how to do them differently.

Speaker 3: 23:15

I coach volleyball up and down motions. I can't get out there and play with you often and I can't be jumping off of things. However, I can still stay with the sport and I can teach you all of the things, but it was an education moment for my young athletes. They've started to feel those things and they got to see somebody that was going through it and it helped them along their diagnosis. So it was helping with the advocacy and it was building community and awareness. But it taught me that my can't. A lot of the times I put my can't on me because I was afraid that I wouldn't be able to do it another way, because I couldn't do it the way I used to be able to do it. How about you, jenny?

Speaker 1: 23:52

I think it depends on where I'm at that day. There are times that I cave in and I give into the can't, which I try to fight all the time. I'm really good at fighting it for other people, but sometimes for myself it's not so easy. I think, when it comes to my chronic illnesses, that I'm a little better at it because for some reason I can push myself to try harder on a flare day for my psoriasis or for my joints. But if I'm having an anxiety day, those are the ones that are the most difficult for me, because I can let anxiety run my entire day. If I'm having a panic attack, you might as well just check me out. My day's gone.

Speaker 1: 24:34

It's hard to come back from because once that goes into the full blown arena it's so hard to bring your body back down, and so the positive self-talk sometimes is not there. But I reach out to someone. I reach out to one of my spoonie sisters. There's been times I've reached out to Andy or a couple of the others that I'm close to and I'm like, hey, talk me down here. I'm struggling with X, Y and Z, and so I think that's one thing that's really important to remember is community is everything. If you are having a tough day, it's okay to reach out to someone and say help me, help me out here, because my positive self-talk is just not there today. I can do it for you, but it's not here for myself.

Speaker 2: 25:15

It's so interesting that you hit on that, because one of the coping skills I teach clients when they're struggling with positive self-talk is to talk to themselves like they would talk to a loved one or friend, right? So if you aren't able in that moment to connect with someone and you think about the situation and you say to yourself, like okay, I'm struggling with X, y, z, would I talk to my? Would I talk to a friend as negatively as I'm talking to myself? Like maybe it's like you should be ashamed that you can't do this in that moment? No, we wouldn't say that to a friend or a loved one, right? So why is it okay to speak to ourselves that way and really challenging those thoughts for ourselves?

Speaker 1: 25:50

That's an absolutely good point, because I think we all fall down that rabbit hole at some point and we think we have to have it all together and all the answers, do all the things. But that's not always easy to do and we do talk so terribly to ourselves. I'm the first to admit it. There's times where I'm like gosh, dang it, jenny, why aren't you pulling it together today? What the heck is wrong with you? Like, let it go, get over it, get up, do the thing. That's not okay. I'd never say that to anyone.

Speaker 2: 26:18

I think the more we get into the habit of talking to ourselves positively and challenging those thoughts, the easier it becomes over time. It's like building any habit right. Like even if we were going to the gym, like we don't pick up the hundred pound weight, and that's our starting point we pick up the five-pound weight and then eventually, the more we lift that weight, the easier it becomes to lift it right. So just like that, that applies to mental health and coping skills as well, I agree, I agree.

Speaker 3: 26:41

I think that was one of the biggest things, the greatest gifts I gave myself was to allow myself the permission, from my perspective, to change from victim to victorious. I understand that life is happening to me, but I was playing the victim in my own story. I understand that I'm going to have really bad days. What it helped me see, though, was the people around me, my community, and whether or not it was truly a community, and I realized that, a lot of the times where I was flaring, the things that were causing my flare was a part of the things that I kept around me because I didn't want to feel isolated.

Speaker 3: 27:16

It is very empowering to sit in a space where you go. I want to feel better, and in order for me to feel better, my mindset has to change, and that, when my mindset changes, there's a possibility that I'm going to lose some people, and that's okay too, but I just want to feel better. So the low lightens when you take the minute to prioritize yourself, and, as conditioned as the world may be to believe that the priority of you being selfish, it's not, because, without you in the equation, if you're the person that people needed things from. Eventually, you are pouring dust. You're pouring dust and it's helping perpetuate your flare.

Speaker 3: 27:58

If you're chronically ill, it just it has been a growing experience, this 20 plus years of living with something that people can't see. It does force compassion, it does force a lot of empathy. You do pause a lot more and you're way less quick to judge, and so I meet people every single day and it's extremely encouraging. How are you doing? I want to know that you're okay. I'm going to stop and I'm going to talk to you and I'm going to make the eye contact. I learned a lot about. I became an expert at being an effective communicator because my health mattered, and when I became an expert at effectively communicating with me, for me, my needs, I was able to effectively communicate with others in a way that they can receive it and be able to show up for me in a way that I needed, where it didn't feel standoffish or pressure or do it this way. So it's worth the looking inward. Sometimes it's not always pretty, but it's worth it.

Speaker 2: 28:58

And I think it's kind of what you're some of. The thing that I hear you're getting to at the core is like that air mask analogy right Like you have to put your own air mask on before you can help others Absolutely, absolutely.

Speaker 3: 29:08

Remove the mask of fine. Be something other than fine. Identify what fine actually looks like for you Is fine? Overwhelmed Is fine, stressed out Is fine. Tired Is fine. I feel like crap, because that's not actually fine. It's the opposite of the dictionary definition of what fine means, but we use it as a placekeeper. I'm fine, how you doing? Good Are you, though? Are you fine, are you good, are you okay? Because if you're not, that's okay too, and there's communities of people that will just hold your hand when you're not okay, and there's help out there.

Speaker 3: 29:39

But I think a lot of the time, especially early diagnosed, we try to do this alone. We already feel isolated, people already don't get it. So we shut't need to happen, guys, and I think a lot of the people that came before you went through it to be on this side of it, to go, hey, the shutdown doesn't have to happen, but when it does, if it does, I've been there too, and we don't have to talk. We could just sit, because I get it. I've been there too. Sometimes you just don't have the words. We don't always want you to fix it, we just want to be heard.

Speaker 1: 30:16

Absolutely Well.

Speaker 2: 30:17

Maggie, thank you for your time. Do you have any last bit of words or encouragement you want to leave listeners with today? I would say, if I had any last words or encouragement, recognize that this is a journey, right, we all have a starting point and you know it's going to take time. There's going to be uphills and downhills and we're going to see paths and we're not sure which way to cross. But continue to meet with yourself and give yourself compassion, empathy and grace, and that will make this journey a lot easier, especially if we can walk this journey with others who understand it. Thank you so much for your time. Thank you so much for having me.

Speaker 3: 30:48

It was a pleasure to get to know you. Maggie, it was a pleasure to get to know you.

Speaker 2: 30:53

Thank you for spending some time with us. Thank you, and you're both so insightful and I know that you provide so much for the Spoonie community, so to be able to be a part of this was a really great experience. I want to say thank you to both of you, of course.

Speaker 3: 31:05

Absolutely.

Speaker 1: 31:07

All right, my Spoonies out there. Until next time, don't forget your spoon.