¶ Navigating Gaslighting in Healthcare
Hi , my Spoonie Sisters . I'm your host , gracefully , Jen , and I am here with Stfanie , and we've had her on here before , but I had to bring her back again so we could talk about some really hot topics slash, probably buzzwords in our community right now . So , hi , Stefanie , how are you doing today ? Hi , I'm great . How are you ?
I'm doing okay , I was just telling you a minute ago , before we started recording , that I did something to my back over the weekend , and so I'm propped up here with some ice packs and a back brace in my bedroom , but we're good to go .
Oh , I'm so sorry about your back .
It happens but thank you . So what you and I were just talking about is the big buzzword in our community is gas lighting . So would you mind bringing up what gas lighting really is to kind of help people better understand it ?
Sure , So before I talk about gas lighting , let me reintroduce myself Definitely So . My name is Stefanie and I'm known within the Spoonie community as the rheumatoid arthritis coach , and on there I help coach women with rheumatoid arthritis live their best lives through managing their symptoms and controlling all of the emotions that go along with rheumatoid arthritis .
I am also an RA patient myself , but additionally I am also a practicing family nurse practitioner , so I kind of sit in both sides , as one could say . I'm a provider as well as a patient , which is a very unique perspective on everything medical right .
So when it comes to gas lighting , gas lighting is a very , very hot topic in our community and all chronic illness communities right now . Right , and not feeling fully supported in a healthcare setting is not uncommon , right .
We've all been there , even me as a medical professional , working with my peers and people who are considered my work friends , i have definitely still felt isolated or unsupported , but I think that there is sometimes confusion with what is gas lighting and what is something else , so I would love to talk about that today .
And I think that is going to be such a helpful tool to our community because I think sometimes we get a little confused and so I'm excited for you to kind of help walk us through what the difference is .
Okay , so I have great examples of both . Like I said , even as a medical professional , i have definitely had experiences with one on one gas lighting as horrible as that is to say right . It's kind of like turning against my own people for me to even admit that , but it's true .
I was my story very short , as I was diagnosed shortly after the birth of my first son . So I was , i had just given birth , which is completely body altering by any stretch of any imagination , and then I had gained a significant amount of weight with that pregnancy .
So I was very , i was , significantly over beast after the birth of my first son And so when I first started on the journey of why I had this hand pain and I just didn't feel well , i was sick all the time but my biggest complaint was really my left thumb .
And while I went on my journey to try to find answers , there was definitely a lot of post partum depression diagnosis , obesity related diagnoses .
You know I was just changing my lifestyle after having a child , kind of talks , or you know , kind of like you got to grow up , you're a mom now , kind of talks , and a lot of that was definitely gas lighting And it was really hard because I knew that something was wrong .
And not only did I know as a patient , but as a medical provider , i knew that this wasn't just from depression and not that depression is mild , but I knew . I knew depression , i knew that what I was experiencing , i knew depression doesn't affect your left thumb right Like you can't blame that .
And then I knew that , even though I was obese , my left thumb really wasn't related and I just knew it was something more . And so I kept . I kept pursuing my journey and I had to really learn how to be a patient and how to communicate my needs and what I really wanted looked at and worked up and what I really wanted taken seriously .
So I do have some really great tips for what to how to talk to your providers .
Okay , So what would be probably your number one most important tip to to consider ?
So , first and foremost , when you go into your medical appointment , you want to have your thoughts organized and be clear and concise .
Because as a medical provider now not as a patient , but as a provider it's very confusing when people come in and say , oh , i have hand pain , but I'm really sad and I'm really tired all the time and my husband's cheating on me and my kid is in school and I can't afford daycare and you kind of go down this path with them And then , as a human right ,
sometimes it's kind of hard to figure out what their priority is or what they're there for . So it's really important that you're just concise . I'm here because my left hand hurts a lot , enough to where it's completely life altering and it's new or it's worse than it was before , and I would really like some attention to that .
Okay , so what would be your second piece of advice ?
So another good tip is , when you first walk in , i would always say I have a few things to talk about today . Or give them a heads up that you're not just a , you didn't just pull your back right , or you're not just there for a little runny nose , like , give them a heads up that , hey , i , you know I'm going to be a little complicated .
If you have a few extra minutes , i'm going to need it , and you can even be as kind as to say hey , you know , i think I'm a little medically complex . If we can address some things today , i'm happy to come back at another time to address the rest of my list .
You know , give give them an opening , give them an opportunity to treat them in their best way . So you got to kind of give them an opening .
Yeah , and I think you know , in our day and age now , so many of us have the opportunity for so like for me personally , i have an app that I can log into , where I can schedule my appointments with my doctors .
I can message them And so maybe , when you're scheduling right in the information box okay , these are the things I need to discuss so they can help decide how long your appointment even needs to be .
That's a great idea . And then , even after you do that , you can also ask how long is our appointment today , because you never really know . You never really know if they scheduled you for 10 minutes or 50 minutes .
Absolutely , and you're not the only patient , even though sometimes we'd like to feel like we are the only patient . They have several to meet in a day , and so we don't want to take up all of their time and make them run behind , right ? So what would be your third tip ?
So another great tip is to definitely have a concise and clear list of things you have already tried . That can actually save you so many steps . So many times people will come in and say I have this , this issue or this complaint , and then you know I can start my notes saying , okay , we're going to try ibuprofen and get these labs .
And then I get to the end of what I'm saying And the patient will say , oh , i've already tried ibuprofen and I already had that left . So then I say , okay , let's go to you know the escalation , the step two , and then after I say it , they've already tried it .
So a lot of times if if you go and just say I've already tried X , y and Z and they didn't work , you can kind of jump ahead to the next step and not take up a lot of time going over things that maybe weren't clear , that you've already tried and didn't work .
Yeah , and I think to go along with that probably you know I am a big fan of writing everything in my planner or a symptom tracker . I think that really comes in handy . Or if you have skin conditions going on , i would take pictures every single day to compare and see what's going on so I can properly show them .
This is how we got from A to B in the last few months .
That's amazing of you .
I would like to think that everybody is thinking that way , but I think a lot of us don't . Even it doesn't occur to people that we need to think ahead like that . And so when I've talked to you know friends in our community that are just getting started . That is probably my biggest recommendation I give them is track everything , write everything down .
If you're using an app , put everything in there . But you need to be able to have all the proper information to provide to them , because if you walk in there and you say , well , when they scheduled this , my back was hurting , but today I feel okay In my mind , how are you going to be able to help me ? Couldn't agree more .
Also , i'm sorry , i interrupted you .
I was just going to tag on to something you said that was great . So you said you go in with your list and you are clearly a very organized , very responsible , very intelligent patient . Right , you go in , you have your list .
So I think another good tip is to remember that if you do have your list and you have had a lot of treatments that have failed , you want to kind of think of this as a date And I know that that sounds crazy and some people gasp and in a poll when I say that , but you want to think of it as a date .
You don't want to go into a date and say like , oh , you know , my first husband cheated and my second husband abused me and my third husband left me with all these kids , right , and I know these are dramatic examples .
But you don't want to go into your appointment and say like I tried three D-Mards , four biologics and nobody can help me And I'm sure you're not going to be able to help me either , because then that just kind of shuts down the conversation too . You know I don't want a second date after that , right ? Nobody does .
It's a two-way street , and so my expectations need to meet reality , and so I need to be kind to you , just like I want you to be kind to me , right .
¶ Recognizing and Addressing Medical Gaslighting
So there is definitely a way to present what you have tried , you know , clearly and concisely in a list form , without a whole lot of emotion . You know it just kind of interferes with getting through what you really need to say .
Absolutely . And so if I came in and I said to you okay , i've got this list and I'm walking through all the steps and I'm being kind like I should be , where would you go from here ?
So that's a really good question , because sometimes people will come in and say they've tried , they keep great records , like you , they're polite , they are responsible , mature , intellectual , everything we talked about and they have this list of things that haven't worked And sometimes , unfortunately , i have to say there were no other options for you .
We've exhausted them all . After that , i will always say there is an option for an alternative treatment . You know , maybe there's something not FDA approved or something just completely alternative which we've all seen and experienced . So it's important to remember that when a provider says that to you , it's not gaslighting .
Science just has not caught up with RA quite yet . We're working on it and every day there are huge advances , and I am so thankful to be a recipient of these advances And I do truly believe that we will find amazing treatments , if not a cure , for RA in my lifetime .
However , there are times when the answer is there just is not another option , and a lot of people will end up getting on and reviewing a provider online about how they're gaslighting them or not listening to them or they don't care .
But I guarantee you I definitely do care And there are tons of providers out there that really do care And on the flip side there are a lot that are not caring and it's fine , like that's a totally different story . But it's just important to remember that if they tell you there's no other options , that that's really not medical gaslighting .
Well , and just like a date , if I try out one rheumatologist and it's not working out and I don't feel like they're taking me seriously , i can go try another one and that's okay , it is okay , you can always get a second opinion .
just be open and honest . that that's what you're going to do , absolutely .
Okay , what other kind of great tips do you have for us today ?
Sometimes people will come to me and say , especially as a coach , people come to me all the time and say I feel like I'm being medically gaslit . So I do have a few things that you can look for to see if you are definitely a victim of medical gaslighting .
So first and foremost is if your medical provider interrupts you , right , you start to talk , they cut you off , they stand everybody's been there , right , everybody's had at least one experience like this .
They stand at the door , don't even come in , you start saying my name is Stephanie , my back hurts , I tried X , y , and then they cut you off And they start writing their script already and you haven't even spoken for 90 seconds . So that's a very clear red flag number one .
The second one that I see probably the most common is if your medical provider just blatantly refuses to come in , is if your medical provider just blatantly refuses to order labs , imaging or other testing for no reason , right ?
Because a lot of times a second opinion or a naturopath , homeopath , a coach , somebody like me might suggest that we look into other avenues or check other labs , take more pictures , whatnot . So then you know patients will go back to their provider .
And if you get a response like oh well , we don't want to go looking for a needle in a haystack or I don't order MRIs , or responses like that are also big red flags because there's no reason that a patient should not participate in .
We actually call it shared decision making , where the patient participates in their own care , and so I help people communicate stuff like that all the time to their provider , and if they ever say like absolutely not , i'm not doing it , that's definitely a sign of medical gaslighting .
So if I called you up , Stefanie , and I said , okay , I just met with my rheumatologist, and he prescribed my first disease , modifying Okay , so this is and this is a true story This is actually from me back in 2012 .
And so if I called you up in 2012 , and I said , Stefanie , I tried this medicine for a week, and I kid you not while I was at my parents visiting them , I had a seizure and I fell and hit my head . I called my rheumatologist to report what happened, and their response to me was well , don't you have epilepsy ? You're on medication for it .
And my response back was actually no . If you went back and looked at my chart , the medication that I am on is for migraines . I've never had a seizure in my life , and this rheumatologist kept pushing and tried to get me to keep taking the medicine .
Ultimately , my husband and I decided that we were going to ignore his instructions because what had happened was very scary and we did not want it to happen again . So if I called you up and I said , stephanie , this is what happened to me and I don't feel like my rheumatologist was listening to me what would you tell me ?
So it's good that they tried to clarify whether or not you had epilepsy . but , regardless of any underlying diagnosis , if you start a new medication and within days or hours have a seizure , the general rule is you stop that medication . So , just as a general rule , you stop it until you know more .
So I'm so sorry that it's a very obvious medical gaslighting situation and I'm so sorry that that happened to you . But yeah , i mean it does happen , but it's . I mean , as I said , i try to be kind , i try to be a good listener And I would say do you have epilepsy ?
Because you never know , and sometimes so all patients aren't like you , right , all patients don't know their whole medical history . Some people aren't even totally sure why they're on that particular medication that I know exactly what you're talking about because it's used for so many things . But so it's good that that we try to explore .
but it sounds like it wasn't really an exploring , open-ended question .
No , not at all , and I am glad that my husband and I listened to our guts And you know I did try to keep seeing this rheumatologist but honestly , it just felt like this is how I was going to keep being treated , no matter how kind I was , no matter what I did . He wasn't running tests , i wasn't even getting a diagnosis .
So that first year was just so difficult , and so I'm thankful that we found me and the rheumatologist I have now and I've been in great hands . I've still had some bad reactions to medications , but that part of life , you never know if that's going to happen And you can have the best doctor or the worst , and it's still going to happen .
And so I'm glad that I was able to just let go and find such a wonderful provider that takes really good care of me and always listens .
I'm so glad that you were able to find that . I know a lot of people listening are thinking they don't have those kinds of resources or that variety of rheumatologists to choose from And that can be really hard . It's not always an option , we understand .
It's not always an option to leave and find somebody new , but if you're in a position to do so , it's always best if this is happening . So I do have a couple other signs . Oh , sorry .
Oh , I was going to say and find your Stefanie . Stephanie is amazing and she will answer any question any time . Her inbox is always open and you are so so , so , so kind .
That's true . My inbox is always open . I'm more than happy to help . My journey was rough , as I know yours was too , and I've been through the gamut , and even as a medical provider even not that I know everything , but even knowing more than the average bear it was still so freaking hard . I can't even put it in words .
So I'm here for you and everybody else .
And I love that about you . I appreciate you . I appreciate you , thank you . Okay , what were you going to say next ?
So I do hope just a few other big red flags , And then I would like to talk about instances when people think they're being gassed . I did , but maybe are not in how to deal with those .
Okay , let's do it , i'm game .
So the last few big red flags , which are obvious examples , is if your healthcare provider really minimizes or downplays how you're feeling , right , like , hey , your back is not that bad , you look fine to me , you should just go home and put some ice on it right , that's really downplaying . Or if they tell you that you're overreacting , being dramatic .
Or if they verbalize any kind of judgment , right , like , oh you know , overweight women like you always hurt their back like this , you'll be fine , i've seen this before right . Or extra red flag if it has anything to do with racism , sexism , ageism or even their personal experience with stuff that is not helpful and very harmful .
And those are huge , huge red flags And we should definitely seek alternative treatments and alternative providers at that point . So those are just the big red flags . Those are the definitions of medical gaslighting .
So just remember , if you're in those situations , i'm so sorry for you , but let's help get you out of the situation and get you the care that you need and deserve .
Absolutely Okay . so what was your next one ?
So another big thing . people come to me a lot and say Stephanie , i'm being medically gaslight , i'm really upset , i need a second opinion . Nobody's listening to me , i feel unseen and unheard , right . So a lot of times people will come to me and say these things .
But there could be other things happening that maybe , as a lay person or as even an outsider , maybe you're just not totally aware of and you're not actually being unseen and unheard . but these other things are happening .
So do you have an example of what kind of things ?
I do So . the first and most common one is that there is just simply a lack of medical treatment options for your condition .
So many times and it's so unfortunate and so sad there are people with very severe cases of rheumatoid arthritis or psoriasis or we've talked about all of these spoony conditions that are very severe , and some people have tried multiple DMARDS , multiple biologics . They've done injections , pills , infusions .
They've been through the gamut for the last 8 , 10 , 12 years and whatever they're on is not working or is no longer working . So there are , unfortunately , times when I have to say there are just no more treatment options . science has not caught up . I'm happy to help you manage your symptoms , but I have nothing more that's FDA approved to offer you .
And a lot of times people get really upset , which is understandable , and there's a lot of emotions when you hear that . right , it's horrible to hear and I don't blame anybody for being upset , but at the same time it's not medical gas lighting .
Absolutely , and I think we just need to be aware that sometimes we're already doing all the things . We're already trying all the correct medications , all the anti-inflammatories , whatever the options are . We're trying them and sometimes our bodies just don't want to cooperate .
And rheumatoid arthritis and psoriasis etc . Just suck . We can all just agree that they are very complex and uncooperative , absolutely , and unpredictable ?
Most definitely Okay , so what would your next one be ?
¶ Navigating Healthcare Challenges and Communication
The next thing is that what I think I see as a medical provider that I think a lot of people aren't able to quite see because of their perspective is that sometimes there are just restrictions with health insurance and also strained resources If you live in a rural area or somewhere where maybe there aren't radiology facilities or other higher skilled medical
professionals , or maybe your provider is just totally tied by what your insurance will provide and will cover .
Sometimes it's not that they're not listening , but they simply can't send you for this special high-end , dedicated MRI because maybe the closest MRI machine is several hundred miles away , or maybe you hit some out of pocket for the year , or maybe your medical insurance simply does not cover X , y and Z and those are the only treatment options left .
So of course , this is a conversation that you should still have with your provider . There are always options of writing letters and trying to appeal things , but definitely it's worth a conversation . But again , this isn't medical gaslighting . Sometimes it's just somebody saying there's nothing else I can offer you because my hands are tied .
Definitely , and if you're able to try traveling , try traveling . Honestly , that's what I'm doing now . I drive four hours to see my rheumatologist because I move to the other side of the state and I don't want to start over . I like where I go .
That's dedication girl . Good for you Well she's fabulous .
She sees me virtually in the wintertime and then in the spring summer I go see her in person . She has me do all my labs over here and I can just keep her in touch on everything that's going on . My family practitioner is working with her to keep her in the loop on everything .
I feel very lucky to have a care team that is working so well together , even though they're miles apart .
That sounds amazing . I'm so happy for you .
I wish it was like that for everyone . I know that not everybody has that kind of explanation or story . I feel very fortunate right now .
Well , it is not everybody's story , for sure .
And not everyone wants to drive four hours to see a doctor .
That's true , but I'm glad that you have the ability and the resources to do that .
So whatever works for you , Absolutely Okay , so what would be your next one ?
So I have three more , Okay . Another one is that you may be seeking a specialized healthcare service from the wrong specialty . So a lot of times people will come into the office who have RA and , let's say , just as an example , they're at the rheumatology office having a follow-up for their RA and they say , hey , I have a new diagnosis of migraines , Right .
So sometimes the rheumatologist might say , well , you know , I'm not addressing that today , or you need to see this other provider , or I'll give you a referral , or they may , you know , ask a brief question , a subsequent question about what you said .
And it's not because they don't care or they don't want to listen , but it's like trying to get an oil change at a nail salon You're just at the wrong specialty . So a lot of times people patients get very frustrated because they think like I'm not listening to all of their problems .
But really , when you see a specialist like a rheumatologist , they have to really focus on that specialty while they're there . So make sure that you're seeing the right doctor And , you know , if you're not sure you can always ask like , hey , I have this other problem . That's new , you know , I've been having these migraines , what do you think ?
And a lot of times they'll just say , yeah , you know , that's not really something we do here , That's not something I can help you with , But you know , let me know if you need something urgently in the meantime .
And it's okay to keep them in the loop of what's going on with you , because once in a while , maybe it's the side effect of your medication , and so that's simply what they need to share with you . I know that , you know . An example from myself is that when I started having problems with my shoulder , I was absolutely convinced it was my RA .
But just because we're having a pain does not mean it's always because of it , And so what I ended up finding out from my rheumatologist was it was an impingement . I'm kicking myself now because I didn't ask more questions . I just assumed , okay , it's going to go away . It did not go away on its own . I had to have shoulder surgery a couple years later .
So next time , if they're saying it's not RA related , ask the questions Right .
That's a perfect example , actually . Yeah .
And I'm kicking myself because if I would ask the questions she could have said actually you probably need to see an orthopedist or your family practitioner and you know , and so on and explain what I need to do . She would have happily done that if I would have thought to ask that question .
But be kind to yourself , because we blame everything on RA when we have RA .
Absolutely .
Girl , i blame everything on RA . I wake up in a bad mood . I'm like it's my RA . Yep , my big toe hurts . I yell at my kids sorry , it's my RA .
Absolutely . And then the next morning it's like oh , my big toe hurts . Oh , i forgot , i hit it on something yesterday . It's actually not my RA .
So be kind to yourself . It happens , But it's so true . If if you , I mean , and that's like the opposite , right , But if you had gone in and said your shoulder hurts , your rheumatologist probably would have said you know , RA really spares the shoulders .
It's very rare to have rheumatoid arthritis in the shoulder And it's actually very rare to have osteoarthritis in a shoulder in someone your age . So this clearly needs further workup , which is outside of a rheumatology scope . You know you definitely could have had a conversation about the treatment you need , probably sooner than a couple of years .
Probably And honestly I think part of it was . it seemed like it was kind of an ebb and flow situation . So sometimes I would get better for a while and you know , six months down the road it was hurting again .
So we would revisit it again because she wanted to make sure that it was definitely not RA related And you know , she even injected it a couple of times . But again , it's okay to ask the questions but try not to be upset with what the answer is , because sometimes , like you said , we need to seek the correct help .
You got to go to the right place for the right service , absolutely . And then we did kind of touch on the second to last one earlier . But sometimes as a medical provider I can definitely say this We're just not given enough time for your appointment . You know , we do a lot in an office . I do not make my own schedule and I don't know anywhere that does .
And most medical groups are transitioning to this bigger group , right , the big I can't say names but the big university medical groups or the big California based medical groups . You know they own a lot , they manage dozens of physicians . They're huge groups .
They use one scheduling program And you know , sometimes , when you know , when I call and say I need an appointment , they don't know that I need extra time . Or maybe it's just their policy to not do that , for whatever reason , right ? So sometimes we're just not given enough time .
So it's okay to have a conversation about time , right , when you start how much time do we have ? Or , you know , preface your appointment with saying I do have quite a few things to discuss . I'm happy to split it up . Or if you have time , i'd like to cover it all .
Or it's always okay to just say like , hey , i'm kind of medically complex , i might need a little extra time today , that's always okay .
Absolutely , and I think to go along with that is stay focused on what you're there for . Don't talk about your vacation , don't talk about your child . I think that's so much time that we're wasting when we need to focus on what we're there for .
That is so true and I hate to say I'm glad you said it and not me , because people think that I'm like a horrible human being when I say like please , you know , try not to be social while you're here , only because it's very distracting .
You know , if I'm trying to work and trying to stay focused on your health , it's very distracting when because , of course , i want to hear about your kids and your vacation , right , like that's , that's like the why it's so distracting , because I love my patients , i love people and I love hearing about how they're snorkeling with RA , like that's like why I do
what I do , right , so that you can have your life back . but then I'm distracted and I'm not in focused work mode and you know it . just , it isn't good for the appointment .
Absolutely . And you know I have a family doctor that every once in a while when I go in for something , while he's helping me , he will talk to me about his children or ask me about my children and that and that's fine , especially if he's the one bringing it up .
But I got to try to , as a patient , also rear it back to what what I'm actually there for . So I think it's for both of us . We both have to do the work to try to stay focused .
Oh yeah , i agree , that's a very good point . And then my very last one why I get a lot of communications about being gaslit is , remember , they don't call these spoony classified diseases invisible illnesses , because they're only invisible to us as patients . Sometimes they're invisible to providers too , and not because we're dumb or don't know what we're looking for .
But sometimes they don't show up on testing . Sometimes you may be too early in the diagnosis , sometimes you may have a different disease that maybe our tests don't quite test for , maybe they're not in the range of what we're testing for .
So sometimes your disease is invisible on paper too , which is unfortunate , and I'm so sorry if that's you and that you are suffering and that you don't have answers yet . But sometimes and it puts providers in a really hard position too because we can't find answers for you . So sometimes we end up just saying I can't do anything else for you .
And it's not gaslighting , it's not because I don't care , it's not because I'm not listening to you , but it's just me saying I've exhausted all of my capabilities .
It's actually . Oh , I was going to say I think it's okay to not like the answer . Just don't take it out on the person giving the answer , because at least they're being honest , Right .
And it's never a bad idea if somebody tells you I can't do something . It's a good hint to go get a second opinion or a second set of eyes , because it's very hard to admit you're wrong . It's very hard to admit you can't do something . So if we're saying that , it means a lot . We're not trying to hurt you .
And there could be a whole room of specialists and maybe only one person in that entire room has seen this rare condition or rare disease , and so maybe that's where that second or even third opinion especially if it's something ultra rare you might have to keep searching .
Really . Or sometimes it's okay to find answers somewhere and then maybe even bring them back to where you can get the care and service that you need . Sometimes it's asking a lot for a specialist to work something up . So when I say work something up , that means start from scratch and try to figure out what it is Like .
Sometimes it's a lot to go into a rheumatologist and tell them about your shoulder when they're seeing you for something else .
So sometimes it might be okay to take the shoulder back to your primary or even start at urgent care and just start from scratch with a complete stranger , a complete fresh set of eyes , and then maybe go back to your rheumatologist and say , hey , i already had X , y and Z work up . I'm pretty sure it's not any of these things .
Can you kind of take over from here ? And a lot of times when those first few boxes are checked it's a little easier to take over and finish that work up .
I think that's a really good point And I think there's a lot of people out there like myself that that would not even occur to us to consider .
It's . I mean , being a medical provider is really hard , i have to say . I do my best every day and then I do my coaching , separate from providing care , and it's a really hard gig to you know , people are complex , we have emotions , we use words , everybody communicates differently , everybody feels pain differently And then everybody has different expectations .
You know there's people who you know their their thumb hurts a little and they want care immediately because they're terrified of whatever that means for the future . And then there's people who you know hurt their back and have six kids at home but don't seek medical care because of whatever . You know there's so many reasons .
But they want to take care of their six kids and they have to work and provide for their family . So there's this whole range of emotions , expectations , insurance , limitations , time . People are really complex . So we have to work together , especially when you're coming in as a medical patient , and try to not assume that you're being gas lit .
If you are , obviously I'm sorry and you should seek alternative services , but at the same time try to stay open minded .
Thank you so much for pointing all this out . I think it's extremely valuable for everyone to think about . Thank you for having me Now . I feel like there was something else we were going to discuss , but my mind is drawing a blank at the moment .
I was just going to say that I am a rheumatoid arthritis coach . That's all I do is all I do in this community is coach women with rheumatoid arthritis to live their very best lives .
And if you are looking for that kind of support , one-on-one , dedicated , completely committed to just you , so very different from what you get at the rheumatologist Not I don't replace a rheumatologist , but just a different type of service You can find me at rheumatoid arthritis coach .
¶ Coaching for Living With Chronic Illness
So when a person reaches out to you and asks for your help and wants to sign up with your coaching , what does that look like ? What exactly do you provide ?
So when I work with you , usually it's over about six months and we meet about every other week for about an hour and we touch on topics all the way from nutrition , exercise , medical records review which is very popular , people really love that All the way to managing your emotions and psychological adaptations that we can make to living with a chronic illness ,
because we are not like everybody else . Our adaptations are very different from other people's adaptations and we have to learn to live with what we have and what we know , and we have to live within what we are capable of , and that does not fit in any other box . That's not a couples therapist or a depression therapist or even a cancer therapist .
That's not the same kind of program . So what I do when I work with you is we go through all of those things and at the end you have so many more tools and you're able to really live your best life and better manage your symptoms of rheumatoid arthritis .
I think that's wonderful and , honestly , just to even explain my labs to me would be wonderful .
Oh , it's great . Yeah , it's amazing , just the light bulbs that go off in the people that I work with . I love it .
But then it's very empowering because I get to educate people on what their labs mean and then they can go back to their provider and they kind of level up and they get better care because they know more and I write letters and communicate to providers all the time . So that's always helpful and it's really really cool .
That sounds wonderful , that's amazing . Thank you . Well , thank you so much for coming back again . It was such a pleasure to have you , and I'm sure we're going to come up with more ideas and topics that I have to have you come back for . So , is there anything you want to leave us with ?
Thank you again for having me and you know where to find me . I think you'll list all of my socials and website and yeah .
Absolutely All right . That's all from me and I hope you enjoyed my Spoonie Sisters .