POTS & Strategies with Maggie

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 ?

A lot of it's just mental health , it's just your anxiety . 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 .

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 .

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 .

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 .

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 .

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 .

So , for instance , for POTS , there is a Facebook page , both internationally and where I'm located in Pennsylvania . 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 .

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 .

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 .

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 .

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 .

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 .

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 . 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 .

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 .

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 .

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 .

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 .

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 .

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 .

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 .

That's a really good one I .

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 . 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 .

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 . 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 ?

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 . 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 .

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 ?

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 .

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 .

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 .

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 .

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 .

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 . 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 .

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 .