EP12 // Never Let Disability Keep You From Your Dreams! An Interview with Alison HayesJun 21, 2021
Alison Hayes, Founder of Thriving While Disabled, is as passionate as I am about not letting chronic illness keep you from living the life of your dreams. In this interview we talk about everything from managing medical care to mindset… including, prioritizing, finding doctor right, information overload, social welfare systems, and staying in the now. She talks honestly about the embarrassment and shame people can have when needing to learn more about social welfare programs. She is a font of personal and professional knowledge to help you on your chronic illness journey so that you, too, can live your dreams, even if, especially if, you live with a chronic condition. A few takeaways from today’s episode:
Where to find Alison:
Facebook Group >>> https://www.facebook.com/groups/207663193339740
Instagram >>> https://www.instagram.com/thrivingw.disabled/
Twitter >>> @Thrivingwdisabl
Where to find Shannon & Finally Effing Happy:
Learn >>> www.finallyeffinghappy.com
Connect >>> [email protected]
Community >>> bit.ly/finallyeffinghappygroup
Email List >>> bit.ly/finallyeffinghappyemaillist
Work with Shannon >>> bit.ly/finallyeffinghappywithshannon
Hello Beautiful and welcome to Finally Effing Happy a podcast and community for kick ass can do women living with chronic illness. My name is Shannon Clank happiness coach and self care strategist. I share with you my personal journey to joy through chronic illness. bring you some amazing guest speakers and share tons of happiness hacks and self care strategies so that you too, can live in joy and happiness, despite what chronic illness or condition you may be living with day today, and I am absolutely thrilled that you were here for today's episode. Because today is a toolbox talk. To put one more tool in your self care healthcare wellness mindset toolbox. As kick ass can do women living with chronic illness, I know you are amazingly resourceful, and you know what works best for you for your health, your heart and spirit, your journey. And in today's episode, you'll pick up a new tool or two to make your journey easier, or be reminded of one that you haven't used in a while. Or maybe you're a fresh take on an oldie but goodie, whatever it may be. I am so excited to share this collective wisdom from some of my most favorite guests during these toolbox talks. So with no further ado, let's see what's in store for us today.
I am so excited to bring you today's interview with the founder and author of the blog thriving while disabled. Alison Hayes is herself a kick ass woman living with chronic illness. She shares her expertise and experience while giving really practical information and advice as an individual with functional neurological disorder or fnd. She knows the stigma surrounding both physical and mental illnesses for both visible and invisible illnesses. And so she just has a wealth of knowledge to share. The subjects on our blog include such practical things as overcoming obstacles, dealing with doctors, getting government assistance, strategizing for success, increasing your independence, taking care of yourself all things that we talked about here. And Finally Effing Happy. So I can't wait to dive into this episode. But before we do, I always need to give you this friendly reminder that nothing I or any of my guests say on Finally Effing Happy, is intended to diagnose, treat or cure any illnesses and anything specific to your condition should be addressed to and receive from your personal medical team. So with that legally is taken care of. Let's dive into today's episode. Tell me a little bit about you. Tell me a little bit about your background and what you do.
Alright, so my name is Alison Hayes and I run a blog called thriving while disabled. It's all about making your best possible life or living with a disability. And I kind of tend to go into what I have experienced the problems I've experienced and what I suspect many other people have gone through.
I especially focus on kind of the combination of mindset, medical care, and the social welfare programs.
So like Social Security, disability, SSI, SNAP benefits, all of the different government all important and big ticket issues if you were living with disability for sure.
Exactly. And it's located right when you're dealing with brain fog and the rest of it. Yeah, absolutely. And also, it's the stuff that's kind of either embarrassing or difficult to ask about, because you don't even want to admit you need it.
And it's stuff that very often, you've never dealt with before in your life. And your family's never dealt with. Right. And so very often there aren't people you can really talk to about this stuff, right.
There's also the embarrassment factor. It's embarrassing to have to ask for these kinds of helps. And there's a lot of social judgment around it. Let alone self judgment. There's a lot of social judgment, and there's a lot of self judgment.
Exactly. And so, you know, I make no bones about the fact that I've actually been living on SSDI most of my life and I've had times where I've been on most of these programs. So you have both personal and professional experience.
I have functional neurological disorder fnd. And I've been developing migraines, and I have a lifelong history of anxiety and depression. So you know firsthand how this goes. And my listeners, as I say all the time, you know, anxiety and depression are the number one co diagnosed with chronic illness, oh, a lot of literature out there in the world, especially in relationship to chronic pain. But I actually find less literature in relationship to just chronic illness in general. But it is something so many of us live with, fight through, etc. Well, and also, there's a lot of stigma around mental health issues. And so it's often extra hard as a person with a disability to get mental health supports, especially if you're on Medicaid, and certain ad or less expensive insurance plans. Or they're really bad at sharing good information about availability of mental health x, as well as the programs that tend to pay the least. So you're more likely to get not great supports, both from the psychiatry from psychiatrists and psychologists. It's not a guarantee by any means. But you've got more dubious people to comb through to find a useful person. So there's, there's a lot of moving parts and all of this. So when did you start your blog, I started my blog about three years ago. And my inspiration for it was actually my partner.
He also is now in the chronic category, chronic disabled category. In 2012, he was in a car accident and had a traumatic brain injury from that. And, yeah, and so I managed all of his medical care, because he was not able to do so. Basically, in his case, the brain injury initially impacted his his balance and coordination, things like that, as well as removing basically all of his emotional self control. And so he's always been a very, very calm, laid back, relaxed guy. And he would just get incredibly upset and angry and really easily frustrated. And it was scary. for both of us, like a tough time for sure. Yeah, some of the things that really jumped out at you during that time in terms of helping to manage his care that like, oh, the rest of the world needs to know this. So the big thing in that was, I felt really fortunate that I already had some experience with brain injuries. Because if I hadn't, I don't know, if I would have been able to weather the impact that had on our relationship. I did have times where I wondered if we'd be able to stay together.
Because if he had continued to have that lack of emotional self control, it would have been unhealthy to stay in that relationship.
Sure, sure. And I think that's a whole other episode you and I could do about chronic illness and relationship. I mean, holy monkey.
That's a whole other category for sure. Right. Absolutely. Yeah. And so that was one of the really scary things, that on top of trying to help him heal and get the support she needed. I also was in this state of evaluating, am I staying in this while also managing your own healthcare? Right? I think that that's a piece that is so critical for us because we are doers. And we are givers and not from a place I get a little bit tired of the conversation about, you know, oh, give up on your perfectionism and stop being a control freak. It's not about perfectionism. And it's not about being a control freak. Oh, no, no, no. I love bringing joy to people. It's one of the things that lights me up more than anything else in the world. I love caring for the people in my inner circle and taking care of them and doing things for them that are nurturing and nourishing. It brings me great joy, it's not coming from an unhealthy place. However, in order for me to do that, I absolutely absolutely absolutely have to be taking care of myself first. So in the midst of all that you're managing your own self care and your own health care. I also had started grad school.
Just a little grad school in there. I love it, right? I mean, yeah, right. I talked about kick ass can do women who live with chronic illness, right? We are like, you know, I'm not letting illness define me. I'm going to grad am absolutely going to live my epic life. Let's do this.
Oh, yeah, no, absolutely. Um, so I, basically his car accident was in June, which was the end of my first year of grad school. So I basically spent a lot of that summer getting him to the right, neurologists getting his TBI recognized, because that's one of the really big issues, especially if it's from an accident. So if you are injured enough that you go to the emergency room, they almost never record a possible brain injury, unless it's something that shows up on a scan. And let me tell you, there's a lot of damage with brain injuries that do not show up on scans that can be permanent. So like, the first thing is, if there's a possibility of you or someone you love having a brain injury, and like signs of brain injuries or things like headaches, headache, dizziness, confusion, it's initially called a concussion in those cases. But if it lasts a certain amount of time, the impacts it goes into post concussive disorder, which is considered a traumatic brain injury. For brain injuries, especially, it's really important to see a neurologist who is familiar with brain injuries relatively soon, especially again, if it's like a car accident or something else, where there's a potential for a claim or a lawsuit.
Make sure you've got the proof that it happened as soon as possible. So that you can say no, this is real, because brain injuries are often hard to document and hard to prove. Well, unfortunately, and it is hard to document and oftentimes takes a long time for people to prove, you know, a lot of our chronic condition, the average person, for my condition, it takes them 10 to 12 years to get properly diagnosed. Right. And I wasn't properly diagnosed until I was 40. And I had only really begun my diagnostic journey, about six years prior to that. And I was considered a success story because I finally I worked my way through all the doctors to finally find my way to a doctor that could properly diagnose my situation. And that's a success story that it took six years and I don't mean to pivot so sharply. But I am you did a talk last night in your Facebook group, which we'll share about a little bit at the end so people can find you about finding doctor right. And I just love that topic. Can you can you give us like a short little summary of some of your nuggets from last night? Sure. Um, yeah, the funding Dr. rate is, was really focused in on why it's so important to find the right doctor, instead of just seeing a doctor
and some of his personality and how your relationship with your doctor is an intimate one. And I'm actually going to do a talk next month, specifically about that intimacy, and actually being at the appointment and evaluating your doctor in that moment. Awesome. This talk this month was about that hunt and the search and how to find them in the first place, which is such an interesting topic because you know, I think about some of my doctors who and I've worked really hard to build a team that I respect and fits my variety of needs, both clinically and emotionally and spiritually, you do have to give them some guidance on what you need and how to help you. Yeah, but the first part is finding a doctor who's even capable of finding what's going on. That's that key beginning point. Right. And so part of what I talked about was health insurance and how that impacts your decision making process. Including not having it and kind of dug into the hole. Where do you look and one of the big things is very often there are if What if you Have a diagnosis or a potential diagnosis, there's a lot of communities online, both nonprofit organizations focused on condition, as well as discussion groups, on Facebook and other places. And that's where you're most likely to get the skinny on, on doctors to really understand that condition. And that's where you're going to get some of the more useful information about the doctor. So I'm a really, I'm really a big fan of going on to those sites and seeing what information they have. Nonprofits themselves, generally do not endorse specific doctors. But they're often our doctors that they choose to interview, or they choose to have do talks. Sure. So those are the experts. Also, a lot of those discussions, a lot of times they'll gather a patient information. So like, my condition fnd, there's actually a map that shows where doctors that other fnd patients say are good, and are fnd aware.
So that you can go there and see if you can find anybody near you to see. And it's not just neurologists, which are the primary treatment option. But also some people say, you know, this chiropractor really seemed to get it or that, you know, my primary care physician really seem to get it things like that. So it's not just neurologists, but it's primarily, you know, so it's one of those, it's well worth digging into it if you have a diagnosis, or if you have a like couple of probable diagnoses. Because the other thing to me that's really important is see the expert so that they can definitively say yes or no, if you see someone who's a good generalist, they can give you a lot of maybes and probabilities. But they can't say definitively, absolutely, you have this condition, or you absolutely do not have this condition until you see the specialist.
You see, that leads me to my next question, which is the thing that I hear a lot, maybe you have tactical, but also an emotional, and I'm talking about doctor fatigue, right? So I hear the “keep going until you find that specialists who can tell you absolutely do or absolutely don't have this particular condition.” I come across so many women who are just like, okay, I can't go to one more doctor, I can't fill out that new patient paperwork one more time, right. So there's there's a logistical tactical piece. But then there's also the mindset, emotional piece. So let's start there. If you were to encourage a woman to just keep going, where would you start? Well, the key is to just keep going is your goal is to see as few doctors as possible while being in the best possible.
So the point of it isn't to keep going forever on this doctor shopping journey. The point is to find the best option you have right now.
And to do that with all of your specialties, and all the things you need. So it's not pick a random doctor and see them. It's do your research first, and really dig into your possibilities, knock out the bad options. Another piece of my talk is about avoiding doctor wrong.
Which includes things like looking at the Medical, the medical board information about if they'd had malpractice lawsuits and things like that. So that you make sure that the doctor that you see really is your best possible option. And if they're really your best possible option, they should be able to get you moving forward in your treatment process. And then you don't need to see another doctor in that specialty for a good while, then you don't need to keep searching, you got the doctor that works.
I also tend to say only look for one type of specialist at a time. If you are really unhappy with your primary care physician, okay, your job is to find a new primary care physician. Don't worry about your specialists. Keep the specialists you got think about that later. Just focus in and finding your new primary care physician one at a time. Yeah, one time. And the other piece of that is do the thing. That's the biggest bang for your buck.
What is the worst doctor who's having the most negative impact on you? Would really move you forward the most things like that. And just focus on that one doctor until you've got the one that works. That's some great, great tactical advice there on that one. And so that leads me to the next question, which is, talk to me about information overload. It is a piece that I hear about, consistently, I support women in my coaching about information overload. You know, there's so many Facebook groups and so many nonprofit organizations, and so many websites to try and find information on the quote unquote, right doctor. So talk about information overload a little bit and how women can handle that.
Okay, so the information overload aspect, don't bite off more than you can chew is the basic first piece of this. Don't look at every website ever everywhere, it's gonna just exhaust you, you're right. So what you do is you focus in again, that what's going to give you the biggest bang for the buck, what's going to be the biggest the best piece of leverage as an example, with functional neurological disorder. There's a nonprofit group that does the lion's share of the work around it. And they're an international group, that's called fnd hope. And so they're my primary resource, they have the largest amount of information available, they've got a lot of the information that I would need. And so if I was talking to a person who just been diagnosed with fnd, it would be okay, let's go over fnd hopes website, and you're going to find most of what you need there. And fnd hope also happens to run a Facebook group, so go to their Facebook group, and use that to start and you may get more information from people within that group. But at least you're starting there. And if you feel overwhelmed, you just kind of go back. That's your home base. Right. And I it's such a great tactical, and I would, you know, add on to that the two pieces that I do in regards to primary immunodeficiency disorders, or, you know, but also invisible disease, that kind of thing. So, create a Google doc or a note on your computer, or bookmarks or whatever is your technical, electronic jam, whatever your comfort zone is, and literally copy and place those links to one place. So I have a note in my I'm on an apple system. And so I use the notes and apple and I have one note that as five links, and I am committed to not adding any more links to that page. So that when I am in total brain fog, exhaustion, overwhelm, but I know I need some connection. I know we need some hope. I know I need to talk to people who understand p I specifically to know that I'm not alone.
I'm not thumbing through my computer. I'm not. What was that? And where was that link again? And then I'm just getting pissy and cranky and tired, right. The other tool that I use when I'm going online for information is I set a timer. Not always, but I try and remember to set a timer. Okay, Shan we're gonna set a timer for 30 minutes. We're just gonna do this for 30 minutes. Because if I feel like I have to get all the answers right now that I'm totally overwhelmed, and I can't you're you're never going to get all of the answers right now. I want them all right now. I hear that all the time. Oh, yeah. But that's not gonna help you only do. Like I said, it's the don't bite off more than you can chew. Right? Get the information that you need about the problem you're managing right now.
Or when you're having a good day, do some extra research so you can get a better overall picture. But if you're in a cog fog, or an emergency kind of mindset, don't get yourself freaked out with all of the things that could possibly be happening. focus in on the one thing you're worried about, get the information you need. And if you start to feel overwhelmed, that means you need to back off and give yourself a break. Hey, beautiful, what an incredibly perfect spot for a quick break. I'm super excited to tell you that I am opening three spots in my 30 day self care starter program at a super discounted beta price of $287 for 30 days, a one on one coaching. Here's the deal. If you feel like your chronic condition keeps you from living the life of your dreams, if there are dreams that you have that you've just sort of given up on or put them on the back burner or do you get to the end of the day and you just feel like by the time you've taken care of the kids
In your work and your partner, and maybe you're taking care of your parents at this time, or maybe you got a passel of fur babies, I don't know. But you get to the end of the day and you feel like there was never enough time or energy left for you. Or maybe you're just having a really hard time transitioning out of this crazy year and a half of Coronavirus and reengaging reinvesting in these new routines. And whatever the new norm looks like, this is totally for you, we take a quick dive into a self care assessment, create some actionable bite size plans, and then I run alongside you for 30 days, cheering you on making tweaks and adjustments to that this is really about you blasting through some old ideas, and celebrating every opportunity we can along the way. So if that sounds interesting to you, email me at [email protected] I'll answer any and all of your questions, get you some more information or shoot me a quick dm and we can connect and get the party started.
So with all of that, let's get back to some of these juicy nuggets from Alison Hayes.
I do view managing your condition as a job. And that's kind of how I tend to put it as an example, when somebody is applying for disability, that's their job. That is a investment in themselves in their future. Because they will eventually get their disability check. And so they're putting in work and effort to qualify for their check in to prove that they're eligible. And that's what their job is. And while they're waiting, they shouldn't be working because that could mess up the disability decision, their job is to see doctors get care and try to improve their condition. So they can prove to Social Security, that that's what they're doing. And they're trying to get better. And that's part of the proving you're disabled and proven able to work. So it's it's, you know, that's your job. Yeah, taking care of yourself is your job, you've got to put your own oxygen mask on first. Because you can't pour from an empty cup. So true. It's take care of you. Get yourself in a good place, get yourself stabilized, get yourself into your groove of your new normal.
And as you do that, see what else you can comfortably take on. But don't prioritize anybody else over yourself. Because you're just going to make yourself worse if you do that. So on that information overload topic, the next question that sort of comes up for me is, so talk a little bit about living with uncertainty living with the unknown living with, I don't have all the answers, because really, there's not an answer. There's just a lot of unknowns. Even my doctors tell me there's so much we don't know about the immune system, Shannon, and here's what we do know. And here's what we can monitor and manage. And quite frankly, here's what we can't. So hey, how do you manage that? But be how do you find that epic, joyful life that you talk about? While living with that unknown?
Well, a big a big part of it is trying not to focus on it too much. For me, fnd. In my case, it expresses as a movement disorder, other people with fnd have none. Basically, it's any neurological symptom out there, and fnd patient can have so some people with fnd tend to have seizures. Some people with fnd tend to have really severe cog fog. Some people with fnd tend to have limb weakness or paralysis.
Some people have indeed had stroke, like symptoms were a part of their body or a part of their face. Usually one side isn't operating well or isn't working properly. Those are all fnd symptoms a signaling issue where the part of the brain that acknowledges control over actions is damaged. And so your body is doing things that your brain told it to do, but you your conscious self doesn't know that you sent the signal.
In my case, like I said, it's mostly movement symptoms like this is an example right now my hand has gotten itself kind of stuck in this position. I can relax it. But that's mental effort to do it, and I didn't say, Hey, get stuck there, it just did it. And then I have to pause and get it back under control.
The thing is, a lot of people have been D develop new symptoms, whenever there's a stress change in their life positive or negative. And symptoms usually develop and respond to stress. One of my unknowns is, what new symptom Am I going to have, right. And, you know, I never know if it's going to be my leg or my hand or since I have a developed with my partner second severe injury, he shattered his seatbelt them. And that's really why I created the blog, he shattered his seatbelt on, which is the biggest one of the biggest bones in your body, the hip joint bone, we didn't know why. And it took us a year to find out that he had autoimmune pernicious anemia.
And so I spent a year like really, again, managing his medical care, but this time, he was able to absorb what I was doing. And was really kind of in awe of my ability to it's, you know, it's the knowing what to say and how to say it. So for me, the uncertainty part, don't borrow trouble, focus on where you are right now. And what's going on with your body, your system and your mind right now, right? manage that. Don't do too much research into what else could possibly go wrong, right? Don't focus on that stuff.
If you want to have a little bit of an understanding, that's cool, but don't dwell on it, don't go too deep in it. And if you're the kind of person who if you have that information, you're going to do it, just don't get that information.
It's what I say, don't live in the wreckage of your future, exact right, like, people can get so stressed out about something that a hasn't happened, and quite frankly, may never happen. So given that we have such finite energy as spoonies, right, now I have to be very mindful about where I pick and choose to put my energy and I don't want to put my energy towards something that hasn't happened, and B may never ever happen. Exactly, I can sure get myself into thinking it's happening. Oh, no, absolutely. And, and, you know, actually, people with fnd are especially prone to the placebo effect, lots of really positive things around the placebo effect. But it can also be the other direction, too. Exactly. And so like one of the things, you know, like all medications tend to have like lists of possible side effects.
And my suggestion is, if you are an anxious person, don't read about the possible side effects. Give it to somebody else who lives with you, or who sees you regularly, so that they can see if they observe those symptoms, but don't you sit there and read about it, if it's gonna stress you out, right. And that's where, you know, I this is where I think you and I are, especially two peas in a pod. That's where sisterhood that's where community that's where taking time to nourish and nurture those relationships. Because you may or may not be living with someone. And quite frankly, sometimes people are living with someone they don't feel particularly safe with or they don't want to share that list with or trust that person to be the point person for their care around it. And so who are those people? And I do I have a crew, I have a crew of about five girlfriends now it's taking me a long time to get these five girlfriends that I can be completely raw with and that is so much about what Finally effing Happy is about is don't do this alone Don't do absolutely chronic illnesses, so isolating and having those people that you can share those lists with to say, Hey, can you you know, can you just keep an eye on me for the next two weeks while I start this medication or whatever? I will give myself the symptoms. Yeah, exactly. I will give myself these symptoms. Yeah. And, and so a lot of this is about that, like self control that, you know, recognize your limits and your weaknesses and work around that. So yeah, so that's a really, it's really important to me to just what can you handle right now and work with that? And sure you want to get better about it. Whatever.
Better is, but you can't be better about it right this second.
Don't work on it, don't try to do everything at once nothing will get done. focus in on one, maybe two things and do them with with medication, especially if you're going to change medications only change one thing at a time. Because otherwise you're not going to know what's having the impact.
So you change one medication, see how it impacts you. When you feel kind of stabilized with it, or have decided you're not taking it, then maybe you try something else. You do not want to do everything at once, because you're just going to confuse yourself. Doing a lot at once is overwhelming for all of us for sure. So always Yeah. So as you know, my community Finally effing Happy they are a group of kick ass can do women just like you and me who live with chronic illness, but are not about to let illness define them or their life. They are incredibly resourceful, amazing. Get it done kind of women. And so if you had one piece of advice, one piece of encouragement, what's that thing that you would share with them, you can do whatever you feel passionate about.
It's like one of the things is, it's all about where you choose to put your energy. And so to me, you pick the thing you really care about the most in the moment. And throw yourself into that, well maintaining yourself care. And you can do that thing, you can't do everything.
But pick your priority. And go with it. You know, I had a few years where my priority was grad school. And I did. Right now my priority is my coaching and blogging. And I'm doing it awesome. And you just pick your thing and do it and you've got to be realistic about it.
But not in a bad way. There may be a doubt patients you need to make there may be you know, depending on what you're trying to do. But whatever you most want to do. Never let your disability get in the way of living your dream.
So it is so effing important. I love that. So telling all the places where people can find you because everyone needs to go find you. So tell me where they can find you. Alright, so my blog is thriving, while disabled. www dot thriving, well disabled, calm, nice and simple.
And that is my blog, and also talks about the different coaching programs I have as well as freebies available to vote. I have a Facebook page and his facebook group both also under the title of thriving well disabled Twitter, my Twitter handle is thriving, well disable. It didn't let you set the dn that happens with Twitter. Keep it short. Yeah, so it's driving w disable. I also have a Pinterest page, which is Pinterest slash thriving, well disabled, I have an Instagram, which is thriving, W disabled. All of those will be in the show notes, or everyone who's interested so they can find you if you want to hear some more from Allison join the Facebook group in particular, because she does these free live presentations in the group that are so worthwhile packed with practical information. And that's where you can find her and those talks. So I'm going to be doing another talk in June. I also have two different coaching programs. Awesome.
One is specifically focused on the managing social welfare. Right? So it's for people who are at any point in the Social Security Disability kind of space so I can help people with getting through the application process. I also offer I also offer help with people who are trying to work well on these programs. I can go over all the rules and regulations with them so that they can plan their business around those challenges.
And anything kind of in between. And then I also have a six month intensive program to help people with the whole managing your medical care.
And so that program is basically meeting monthly for a long session to just go over what you're trying to manage, and help you get to those next steps. And then I'm also available by email through the whole thing. So that any questions, any any little details, I can check in with you on things, we're working on all of those kinds of things
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