This Is What Real Advocacy Looks Like, Chronic Illness Edition with Jennifer Sutton M.ed LCMHCA NCC
Chronic Hope Cares: Advocacy, Support, and Resources
Jennifer Sutton discusses Chronic Hope Cares, a nonprofit organization dedicated to providing support, advocacy, connection, and resources for the chronic pain and illness community. One of the organization's primary initiatives is the Advocacy Program, where they teach individuals how to advocate for themselves effectively. The program aims to empower chronic pain patients to communicate with medical professionals, express their needs, and make informed decisions about their healthcare.
Advocacy Training and Empowerment
Jennifer emphasizes the importance of teaching people with chronic pain how to advocate for themselves. Many individuals in the chronic pain community struggle to assert their needs, often facing challenging situations in healthcare settings. Chronic Hope Cares provides training and pairs chronic pain patients with trained volunteer advocates, often interns working with Chronic Hope Counseling. Advocates learn effective communication, goal-setting for doctor's appointments, and how to navigate the complexities of being a chronic pain patient. The goal is to empower individuals to take control of their health and advocate for the care they deserve.
Support and Connection
Chronic Hope Cares offers various support initiatives, such as a pen pal program, to create a sense of community and safety within the chronic pain world. The organization recognizes the challenges of adjusting to chronic illness and aims to make this transition a little less daunting for individuals who may feel overwhelmed and isolated.
A Shared Vision for a Safer, More Empowered Chronic Pain Community
Jennifer Sutton's passion for empowering the chronic pain community shines through in this conversation. Chronic Hope Cares and Chronic Hope Counseling are dedicated to making the world a safer and more empowering place for those living with chronic pain and illness.
Goal Setting in Chronic Pain Management
Jennifer Sutton highlights the importance of goal setting in managing chronic pain. Patients are encouraged to identify their goals for medical appointments, defining what success means to them. Goal setting empowers patients to take an active role in their healthcare decisions. For example, a patient may set a goal to obtain a specialist referral. Chronic Hope Cares assists patients in preparing for these appointments, offering role-playing exercises to build their confidence and communication skills.
The Power of Self-Advocacy
Jennifer emphasizes the value of self-advocacy, helping patients realize that they have the right to assert their needs and make informed choices about their healthcare. While medical professionals are experts in their fields, patients are experts in their bodies. Jennifer shares the importance of recognizing when a treatment or procedure isn't working, even if it means challenging a doctor's recommendation. Patients can choose to leave an uncomfortable situation or voice their concerns mid-exam, reclaiming their agency and power in the process.
Community and Shared Experiences
Chronic Hope Cares fosters a sense of community and safety within the chronic pain world. Jennifer discusses the pen pal program, which pairs individuals with chronic pain to create connections and offer support. She believes that shared experiences and learning from one another's mistakes can significantly benefit those navigating chronic pain.
The Complex Nature of Chronic Illness
Jennifer and Destiny acknowledge the complexity of chronic illnesses. With countless conditions and variations within each, it can be challenging for patients to find a treatment that works best for them. This complexity underscores the importance of a robust and diverse community where individuals can share their experiences and learn from others.
Balancing Fear and Courage
Jennifer recognizes that fear often plays a role in the decision-making process for individuals with chronic illnesses. Patients may be hesitant to try a new treatment due to past negative experiences or uncertainty about its effectiveness. However, finding the right treatment often involves stepping out of one's comfort zone. Jennifer and Destiny emphasize the significance of striking a balance between acknowledging valid fears and exploring potentially beneficial treatment options.
The Role of Patient Self-Advocacy
Jennifer shares her journey of self-advocacy, highlighting the importance of taking an active role in one's healthcare. She mentions her own experience in researching and diagnosing herself before finding the right doctor. Self-advocacy is a powerful tool for patients to ensure their voices are heard and that they receive the best possible care.
Expanding Access Through Awareness
Jennifer acknowledges that getting the word out about her nonprofit's services is a challenge. Despite this, she is passionate about helping others and providing support to the chronic pain community. Chronic Hope Cares offers counseling services accessible through platforms like Zoom, making it available to people beyond North Carolina.
Staying Updated with Chronic Hope Cares
Jennifer mentions that Chronic Hope Cares has a newsletter to keep people informed about its activities and services, which is an excellent way to stay connected and learn about resources and advocacy efforts.
Conclusion
Jennifer Sutton's inspiring journey through chronic illness, self-advocacy, and the establishment of Chronic Hope Cares brings to light the profound challenges that individuals living with chronic pain and illness face daily. Her story underscores the importance of resilience, self-empowerment, and community support in navigating the often complex world of healthcare.
Disclaimer: Everything we discuss here is just meant to be general education and information. It's not intended as personal mental health or medical advice. If you have any questions related to your unique circumstances, please contact a licensed therapist or medical professional in your state of residence.
Destiny Davis, LPC CRC, is solely responsible for the content of this article. The views expressed herein may or may not necessarily reflect the opinions of the guest.
The content in this blog post comes directly from a real, human interview between Destiny and her guest on The Chronic Illness Therapist Podcast. This written version was formatted using AI. Listen to the full episode to hear the actual conversation.
Listen to my full conversation with Jennifer Sutton on Ep 4: This Is What Real Advocacy Looks Like, Chronic Illness Edition with Jennifer Sutton M.ed LCMHCA NCC
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Episode transcribed with AI and may contain errors that are not representative of the actual word or meaning of the sentence.
Welcome. Jennifer,
Jennifer Sutton is a North Carolina native who grew up in a small community of Pittsboro.
She's been a part of the chronic pain community for well over a decade and has firsthand experience with the physical and emotional struggles that come with pain. She found her passion for working with people who suffer from chronic pain and illness. When she discovered how isolating pain can be and the lack of resources available for those who struggle.
Jennifer is a licensed clinical mental health counselor associate in the state of North Carolina, as well as a national certified counselor. Jennifer opened Chronic Hope Counseling in 2019 and hopes to create a safe space focused solely on helping the chronic pain and illness community learn to live beyond their pain, realizing that she wanted to do more she found her nonprofit, Chronic Hope Cares in 2021 to provide support advocacy, connection, and resources for all the chronic pain and illness community.
Jennifer, could you tell us a little bit about this nonprofit and what do you guys do?
Yeah. So the non-profit is very new, as you said. Um, it took a very, very long time to actually create it, uh, Darren COVID times, but we do a lot of different things.
Um, one of the main things we do as what I call the advocacy program and a lot of people upon hearing. I think that we go out and advocate, but it's actually something very different. We teach people within the chronic pain community how to advocate for themselves. So, um, I, through being a counselor would hear horror stories of, especially Darren COVID people having to go to the hospital alone and being.
Pretty much abused in the hospital setting and being taken advantage of and the way that they were forced to take medications or were talked into surgeries, they didn't need, because they didn't know how to stand up for themselves or didn't know how to communicate. Like I'm uncomfortable. I don't want to do this.
And. That really, really stuck with me. And I knew just being a chronic pain patient, how hard that is. I mean, in our community, doctors are huge, almost a God-like beings, and it's very hard to stand up in a situation like that. We partner people with chronic pain, with volunteer advocates that we trained very well.
Um, a lot of our advocates right now are actually interns that are working in chronic hope counseling, and we teach them how to advocate. We teach them how to communicate. We teach them how to goal set for their doctor's appointments. We teach them how to communicate with their doctors and pretty much how to effectively be a chronic pain patient.
And a lot of people think like that's kind of silly. Like why do you need to learn to be a chronic pain patient? But it really is a big learning curve. You have to learn so many new things and we kind of swoop in and teach that in a really caring and often structured way. We have a lot of worksheets. We work one-on-one and we really try to make people understand that their health is in their hands.
And that can be a really powerful thing. So that's a big thing we do. And we do a lot of little things as well. We have like a pen pal program where we partner up to people with chronic pain that. Email are, do old school letters and we just try to make the chronic pain world a little smaller
and a little safer it sounds like.
Yeah, that really is the goal because it's terrifying. I remember going from being healthy, I was a competitive tennis player for most of my youth and I was very healthy and I remember becoming chronically ill. And for more than one reason, it's terrifying and making that adjustment alone.
A lot of times when doctors don't understand what's going on is very overwhelming and we're there to be that support.
Yeah. Can you give an example of maybe what some of your interns teach as far as advocacy? What are some concrete things that maybe you've seen to be the most helpful? Just give people a little bit of spark.
Yeah. So, um, I did mention in goal setting, um, I really enjoy teaching that just people in the chronic pain community. Okay, you're going to this doctor's appointment and we have a really good goal setting worksheets. And what do you want to get out of this appointment? What is going to make you feel like this appointment was a success and how are you going to make sure you get that?
And it can be as simple as. I want to go in to my general practitioner and I really want a gastroenterologist referral. Okay. Well, how do you go in communicate that, um, You know, some people like to go in and explain their symptoms of GI symptoms and other people like to go in and be like, I want a gastroenterologist referral and neither of those are wrong.
And we role play a lot of that, you know, pretend I'm the doctor. What would you say? You know, get comfortable. Um, Some of that is, you know, this medication isn't working. A lot of people have a really hard time communicating to doctors that this medication isn't working. How do I tell a doctor that who has given me five different medications before?
Yeah.
Yeah. I would imagine the fear in all of goal setting, why goal setting tends to be so hard for people with chronic pain is because there's so much failure that comes along with, with trying to accomplish some of these things. So it sounds like you go into that and you're like, so what do you do with that?
When someone's like, I've already asked my doctor for five different medications, what what's next for them?
Yeah. That's really up to them. You know, it really is. And very individualistic, you know, what do they want to do? Um, we're not really big into telling them what's next, you know, we're big into, what do you think is next and how can we help you get there?
And, um, a lot of people don't realize that they don't have to stick with that doctor. If that doctor makes them feel uncomfortable. I remember my mom telling me once that she was, she was at an appointment with like a gynecologist or something. And the doctor was making her feel really uncomfortable. And she had this moment where she realized like, I don't have to stay here and do this exam with this doctor.
I can leave. And she got up and she left. People don't realize they can do that mid exam. If you feel uncomfortable, you can be like, I don't want to be here. I want to leave. I don't want to finish this. And just having that power of like, okay, they may be an expert in whatever specialty, they are an expert in, but you're an expert in you.
And there's a lot of power in that. And helping them realize that they have power and what ever they're struggling with as well. They're not just they're along for the ride there. They have a lot of say as well and helping them find that voice.
Yeah. I think it's a good point that a lot of people don't realize, or the fear is just so big inside of them that even though they might be sitting there thinking like, I really don't want to be here.
There's just too much blocking them to kind of get up and leave. But having someone who honestly gives you that permission, not that any of us need permission. Um, some of us, yeah. Until we see it or hear it from someone else, it's just, it doesn't even register that that's something that we can do.
Absolutely. And
it's not that we, they need permission, but they need to realize that they have that permission. Right. Because I have done procedures and medications that I knew were wrong for me, but I know that. I needed to take this medication to get to the next step, even though I knew it was wrong for me and looking back, I should have handled that differently.
And I always say, I like to learn from other people's mistakes. I don't like to learn from mine. Um, I'd much rather learn from someone else's. So I think if we can get, you know, a big community of people together who have learned, you know, Just what it is to be chronically ill and have seen these mistakes for themselves and the new people coming up.
Don't have to relearn them. We've already done that for them. And that can be huge.
Can you give an example of maybe what, um, it feels like or how, you know, when something's not working for you?
Yeah. That it can be very, very different, you know? Um, For me, I've been dealing with a lot of hormonal things. Um, I had surgery on my uterus and this past year, and recently I had a doctor that told me my only choice was to switch up my type of birth control.
And I know I'm like, this is stupid. I've done this before I have changed my birth control and every time I get sicker and I know it was going to be wrong to do. I was told by like two different doctors that it was my only choice. And I knew in my mind that wasn't true. I knew there were other choices, but I do like to try to trust the doctors that I see.
And so even with all my experience and all of my logic, I still decided to go along with that. And it did make things worse. You know, I'm still struggling in a completely different way. And. My symptoms are worse. So a lot of times it can be worsening of symptoms. It can be new symptoms that are completely out of left field.
You've never seen them before. And you're like, what is this? Like, I've came in to try to fix one thing and all of a sudden there's something completely different. Um, it can be. Like you have a diagnosis and there is something like a procedure that's actually known to be bad to go along with that diagnosis.
And they recommend that if you have to kind of be like, Hey, I know my diagnosis is rare, but this is known to not be good with this diagnosis. I've done those as well. I've been talked into those procedures as well, and you know, I can come in a whole different. You know, box of flavors, but it all comes down to just not being good for your body in one way or another.
It sounds like there is a little bit of experience that's needed, like some, some trial and error of on your own before you kind of get to a point of like, this is how I, this is how I can be proactive now and say, I know this doesn't work for me. It sounds like you kind of have to have some of those negative experiences before you get to a place like that.
Yeah. Yeah, there's definitely, that's one way to do it. And I think another way is having that community, like if I would've had a better community around my diagnosis, which I have Ehlers-Danlos syndrome, and if I would've been more in that community, I would have known more that what procedures work and what don't.
So I could have learned from other people's mistakes.
Yeah.
Yeah. That's a hard one too, with. There are so many different types. And so it does show up differently in so many different people. So I would imagine you would need a pretty good large community and then to know yourself too, because if somebody is saying, you know, this didn't work for me.
But, but why like, can you explain why, so that, you know, if it relates to you or not, because it might not, but it also might. And so, um, yeah, I just think that's a hard one because, um, there could be a lot of fear in, I know I've had some experiences where there's fear of trying a certain thing and then I, I finally gave in and it was the right choice for me.
So I think it's a balance. I think that experience that community, um, it all goes hand in hand.
Yeah, it definitely does. And you know, sometimes that fear is valid and sometimes it's just a fear. That's, that's simply a fear and we do have to get out of our comfort zone to find what's right for us as well.
And so there's definitely no one size fits all for anything.
It's that's what makes chronic illness so hard is that there is no, even with the same diagnosis, it can show up differently in so many different people. Um, and I think it's also really hard to, to know that, you know, what you said was true, you know?
There are certain treatments where I know that that is actually with this diagnosis, that is not a beneficial treatment, but you would think, you know, why are doctors doing this? And I can't speak to that. I can't speak to why they might choose a certain treatment. I don't know if it's not enough information, you can't be expected to know everything.
But what's hard, I think is when you have someone who's like, Nope, this is the only option versus a doctor. Who's new. More like, let me look into that a little bit more, or let's work through this together. Um, and at the end of the day, if you're feeling resistant to a certain type of. Even if it is something that maybe would be beneficial for you think your body sets sets, it turns on the fire alarms.
Yeah, for sure. Yeah. I love the doctors that say, I don't know, but let's find out I love those are the ones that just seem excited or intrigued to kind of go on the journey with you. Or, you know, seem excited in some sort of way. Those are the ones I always tend to stick with instead of the ones that just think they know everything and they give you one option that, that that's always kind of something that sticks out to me in a negative way.
Yeah. Or the ones with the signs on their walls. Now that say don't confuse your, your experience with my degree or don't ask Dr. Google.
Yeah. Oh my God. Where would I be without. Yeah, Googling. Like I diagnosed myself and then it took me years to get a doctor to get into the right doctor. You have to get into a geneticist to confirm that.
And I would have never gotten there without doing some of my own research.
Yeah.
Can you speak a little bit to your research process? Um, or even, you know, what it looks like for people that you see? Cause I think that's important for people to hear.
Yeah, absolutely. So. I in retrospect, I didn't realize this until very recently, but I have been chronically ill my whole life.
Um, EDS is genetic. So my mom and my sister has it. So. When I would tell my mom when I was little, my leg would hurt. She's like, oh, when I was little, when my leg would hurt, I would just wrap it with a pillow case this way. See it's normal. It's so like it's so I was like, oh, everybody's leg hurts and they just wrap it in pillowcases.
And so, like, I didn't realize I was dealing with something that wasn't normal. Until well into my teens, even though my sister and I both had jaw dislocations and jaw surgery in our teens, I thought it was normal. My older sister did it. It's just something people do. You know? So, um, yeah, so very long time I was dealing with chronic illness without knowing it, but by the time it got debilitating, it was over a decade before I got someone to put put a name to what was going on and it's exhausting. Um, I was in my late teens, early twenties searching for an answer for something that was. Progressing. I had a lot of doctors tell me I was young and to shake it off, it would be fine to start power lifting and running and walk it off. And that messes with your head in so many different ways.
Cause you're like, oh, if I just do that, It will go away. And that damages you mentally and physically, because I kept playing tennis and I kept exercising, not listening to my body. I really tuned my body out. And it took me a very long time to tune back into that and start listening to it. But I continuously went to doctors for about a decade and if I hadn't been persistent, and if I hadn't done research on my own, I'd never would have gotten a diagnosis.
And I went in to a migraine specialist. I had been having migraines. I still have this problem, but I've been having migraines pretty much daily for quite a while. And I walked in and I sat down and this doctor looks at me and he goes, do you have EDS?
And I'm like... I have no idea. I don't know what that is. And, um, in retrospect, when I hurt, I tend to fold my hands and walk in a certain way that I'm very protective of my joints. And he's like, you know, he did a few things with my joints and he's like, girl, you're hyper mobile. I had been going to physical therapy for about six, seven years at that point, and nobody had told me I was hyper mobile and he's like, you need to fight for an EDS diagnosis. It's like, do some research, get on every geneticist waiting list you can and fight for an EDS diagnosis. And that's what I did. And, um, I was finally diagnosed officially the summer of 2020. So it was not that long ago.
So I knew I had it for a few years before then, but if it's not in the records, it's not real. Right. So it took a long time. And if you don't have the time, if you don't have the insurance, if you don't have the money, if you don't have the wonderful husband to drive you around, if you don't have all of these resources, you'll fall through the cracks and that's heartbreaking.
It shouldn't, it shouldn't happen. And I see it all the time.
Yeah. It shouldn't be that way.
Is there anything, is this where some of your advocates come in, do your advocates ever go to doctor's appointments with patients with clients or is that more so just they're teaching them their own self-advocacy
we haven't because of COVID.
Um, it is in the description on the website that we hope to do that soon, especially with ER visits and especially during surgeries, because I do know people that go to surgeries alone and get sent home alone. And shouldn't happen. Yeah. And I think it does take some practice, you know, having someone to go with you to these doctor's appointments.
And that is something I want to do, but a lot of places still aren't letting someone come into appointments with that with you, which I think they shouldn't be allowed to do. Yeah, I know I had surgery during COVID time. I had, um, a full joint refiguration on my jaw and my husband had to drop me off at duke and wave as I walked through the door and I had to do it alone and it was terrifying.
And then he should have been able to stay. Other hospitals were letting people stay and we both had been COVID tested. Right.
Yeah. It's, it's hard right now. I think, um, there's so many different, there's many different policies and laws and. Um, even our health professionals in the country, like saying different things and, um, you know, things change over time and that's okay.
But right now it feels like a free for all. Like everyone just do what you want. And some people
are kind of like, Adamantly sticking to their guns about things that maybe we now know aren't necessary. And then we also have people totally still laissez-faire as if COVID isn't real. So it's it's we run the gamut in this country and it makes it so much harder for the people who need help and need services, because there's already so much uncertainty in chronic illness and there's already so much fear.
And then to add that level of, I don't know if I'm going to be able to even have support through this. Right. It really just adds a
whole extra level. Yeah, it was, it was definitely scary because we had both been vaccinated at that point. We had both been COVID tested and. I have bad reactions to anesthesia.
So I come out fighting and I hallucinate. So I knew I had these complications and I didn't know who was going to be around me. And I had known that like I had surgery when I was a teenager and I slapped a doctor coming out of anesthesia and not knowing. And the doctor had a bad reaction. Got upset and like left like mid surgery.
And so I don't know what's going to happen. So I've felt very unsafe. Not having someone in the building to advocate for me. Yeah. Yeah.
With such an experience like that in the past, I can only imagine.
And I'm like, that's how some people feel all the time. You know, I have people reach out to me all the time saying I have to have surgery.
Is there anyone who can drive me and stay there and drive me home?
And it sounds like your nonprofits doing some good work around that as much as they can, but it's still just being held back a little.
Yeah, it definitely is. Not a lot of people know about it yet, and we've been struggling to get the word out and, you know, we hope to get more people involved and it will become bigger sooner. Cause we definitely, I love what it does and I'm really passionate about what it does.
So I want to be able to help as many people as we can with that. And you know, with counseling, wherever restricted to North Carolina, but with the non-profit. So we can work with anybody with that, with the power of zoom and zoom has really. Done some great things until the health has done some great things.
So we really have access to help anybody, which is a great part of the non-profit, which is part of why I opened it because I hated being so restricted to North Carolina.
Yeah.
Yeah. Um, do you have a newsletter that kind of keeps people updated on, on what's going on with there
yeah, I do.
So, um, we kind of combine the counseling center and chronic hope cares newsletter for now, just because we don't have enough people signed up for the nonprofit one, but they can just send me an email. I don't know if you'll have my email somewhere.
Yeah, I can, I can definitely add your email in the show notes.
Yeah. But just send me an email and we'll add you to that list.
Okay, cool.
Yeah, I think it's, um, it's just so important people. Advocacy work. And I, what I loved the most was that you said you do role play with people because, um, it's one thing to just teach and then say, okay, you like go out in the world and do it, but you need that modeling. You need that experience.
And. Where roleplay comes in really handy in situations like that. Yeah. And what's great is a lot of the volunteers we have now, like I said, they're interns at chronic hope counseling. So they're going through master's program for counseling, working as advocates. So they're very knowledgeable with what they're doing.
Yeah. And they're very, well-trained even the volunteers who aren't interns. They, I train them. They have access to all the same, um, worksheets and everything, and they talk to me and just, we never just train them and then send them out, you know? Well, they'll always keep in touch with us.
Yeah.
This is a lot of work. It's hard work. What keeps you going?
Yeah. So, you know, I've talked a little bit about just my chronic illness and I struggle a lot with my health.
I struggle every day with my health and I decided at some point that something good had to come out of my illness out of my struggle. And this was it. This is what came out of it. And it's all pure passion. And. Passionate and rage, which sounds so silly, but I, I feel the lack of resources and that makes me so angry.
And I just want to create the resources that I wish I had when I was first diagnosed. And every day after that,
It's it doesn't sound silly at all. Anger is a really strong motivator and a lot of us just suppress our anger, right? Because in this society we're not supposed to share or, or express our anger, especially as women.
Um, and so I think it's important that you mentioned that your anger, our anger can drive us and kind of drive you to do good, or can it drive you to maybe do not so good.
Yeah, thanks for saying that.
Yeah, it was about a decade ago. And I started getting pretty sick and I decided to try to look for a counselor.
And I was sent to an addictions counselor cause they told me that was the closest thing they had to a chronic pain counselor. And I got so mad and I'm like, I'm not on any medication. I'm not addicted to anything. And that day I went home and started researching grad schools. That's ridiculous. Like there's no one, I looked up like, there is no one specializing in this and like, there are some counselors out there.
That, um, you know, counselors like to list like 15 specialties and chronic pain will be in there somewhere, but it's close to the bottom as something that maybe they've seen one or two people, but there was no body that was a hundred percent focused on chronic pain. And that made no sense to me. So I went back to school and, um, from the beginning I knew that's what I wanted to do.
And. Throughout my entire program, chronic pain counseling was never brought up except when I brought it up and I'm like that needs to change. So I go back to my grad school now and I do talks on chronic pain counseling. And I take interns from my Alma mater and I try to make sure that it's not left out of the curriculum anymore.
Cause it, it shouldn't be.
I love that you're doing that. Yeah. You're right. Chronic pain is just an all anyone ever knows about it as addiction. Yeah. Um, which is a whole other topic of why these people got addicted in the first place. If you're, it goes hand in hand because of how over prescribed medications are and how nothing else has given to I, when we start to get into.
Concept of mindfulness and things that you can do for your chronic pain. It can sound really invalidating. So I always want to make sure that I give that caveat before I start talking about it, but there are things you can do to mitigate your pain so that it's not so heavy. So hard level 10 day after day after day.
But if you take pain medication for a lengthy amount of time, Your body has no resources, no ability to handle it because everything's been covered up with that. And pain medication can be great short term. I mean, it's, it's not a, it's not a crutch.
It's not a bad thing, but when you're taking it for months and months on end and no one has told you any other way to handle that pain,
it's hard. It's hard to bounce back from that. Absolutely can, but you're gonna need a lot of support and that's why I love your advocacy program because that support is hard to find.
Yeah. Yeah, it absolutely is. And, and, you know, a lot of times things are prescribed without any sort of education. I know my mom had knee replacement surgery and she literally came home with a bottle of like 90 oxies and she's like, should I take this? I'm like, you should call your doctor and talk to them about that.
Probably. Cause that's a lot. That's a lot. Yeah. So it's definitely something that's given without education.
Yeah. Yeah. I think it's over prescribed in a lot of ways. And then now it feels like some providers won't give it at all. So it's, once again, different policies, different, like everywhere you go, it goes back to that, not knowing what to expect and if you know how to advocate for yourself and just speak up for yourself it reduces some of that fear of like asking questions. You don't know if your doctor is a type of doctor, who's willing to hand them out like candy, or if they're going to be like, no you're in need and I'm still not going to give it to you.
Right.
Yeah. Cause like full disclosure here, I use a pain patch that gives me really, really low dose pain meds consistently throughout the day.
And I get joint dislocations pretty consistently. Um, and I wasn't walking before they gave them to me and it got me back up and walking and I think that. There are places for some things. Yeah. And I just think that you have to learn to advocate and find what's right for you.
Yeah. It's one tool in a whole toolbox.
Yeah. This was after a very long time of trying everything. This was not a first, a first, you know, It's not the first thing I tried for short. This was probably around the 50th 60th thingI've tried
yeah.
I think that's like that for a lot of people. Um, yeah. Do you find, I know I've found, uh, within my work with chronic pain, that most of my clients don't, they don't take medication.
And it's interesting because the narrative is still so much around chronic pain and addiction, but the clients, and maybe it's just the client to find me, but. You know, because I don't advertise it. I don't work with addiction. Um, and so maybe that's why I don't get any, but yeah. Can you speak a little bit to that?
Yeah.
I find that I find the same thing. I find defending thing. My clients are pretty under medicated. Honestly, I find that very, very, very, very few of mine I've ever been concerned about the amount of medication they take. Very few of them. Have I ever see. Any sort of addiction qualities. I mean, I would say 96, 97% of my clients, I have never been concerned with any sort of addictive behaviors.
And I think it is because you know what we're aware of, that we are aware of that as someone with chronic pain, we're very vigilant with how the world sees that. And there is more education with chronic pain. Now, you know, there are plenty of doctors that I've been to at that say right off the bat, you know, we're not a clinic that prescribes anything, which in certain circumstances can be very beneficial to be in those kinds of clinics.
And I do know with, you know, the medication I am prescribed, I have to go to them every four weeks. I can't get prescribed. Any sort of medication, unless I'm in their office, I don't get any refills. And I think it's monitored a little bit more and I think there are more resources and there are more, it's not the first thing, you know, I did nerve ablations.
I did everything. I mean, I did everything and I think most people have done everything.
And then there's. Um, emotional and mental health side of things to help, um, deal with your chronic pain. Can you talk a little bit about your experience or what you work on with clients?
Yeah, so I think one thing that people don't realize is that physical pain and suffering are two very different things.
I think that. You can be in a lot of physical pain and not necessarily have a high level of suffering. And on the other end, you can have a lot of suffering and not have a high level of physical pain. And I think that can change day to day. As I know there are some days where I have my worst pain, but I'm actually in an okay mood.
You know, they don't always correlate 100% and that's really, really important. To educate clients on and let them know that even though I can't fix your pain, I'm not a doctor. You know, that's not something I have control of. We can fix the suffering in a lot of times, they're very intertwined. You know, they'll like a ball of yarn that you find in a basement and you're like, crap.
There's no way I'm getting that undone, but we can little by little, we can start separating this out. And it has to do with the way we think about, and the way we process the pain that we're in is going to decide the suffering that we feel. And that's where the coping, the meditation, the mindfulness, the mental health side comes in to pain.
It's let's minimize your suffering.
I love the way you put that in the way that you delineate suffering and pain. I think that a lot of us, you know, at one point or another, feel like if I'm not suffering, then people won't know my pain is real. And so I have to prove it even more so that other, because inherently it improves our pain to be seen by other people.
If people aren't seeing us, it's kind of this vicious cycle, but I'm going to go into suffering mode so that you will see me, which will make my pain worse. And then you'll you seeing me might make my pain a little better and again, just goes back and forth.
Absolutely. And I think that goes a lot into invalidation that.
We feel whether, you know, by family, by just people around us, by doctors, you know, I've had my mom or people around me say like, okay, we're going to this doctor. You need, you need to show them that you're sick, like act sick today, you know? And I get that, you know, because if you go in this smiling and chirpy, you're not going to necessarily get what you need because people do have stereotypes in their head of what.
Someone chronically ill looks like, and those stereotypes suck. And I fake breaking those and changing those is a whole different story, but it is a suffering person is what that stereotype is. It's someone crippling over in pain. It's someone in a bad mood. It's someone that's just so overwhelmed by their pain that they can't talk or function, but you know, what you don't know is.
I'm in quite a bit of pain today, you know, I'm struggling. I had physical therapy yesterday and that always triggers things. I had a migraine last night. That's not good, but I'm in an okay mood today. I don't, you know, if someone was to walk in, they probably wouldn't know that. Right. And that's because we do find ways to separate those out.
You don't have to suffer to be in pain, right? Yeah. I like to tell this, the story, um, that we have these two different scenarios, right? I always give this when I'm giving a talk or something, and I'd like the audience to decide it kind of scenario a or scenario B, which person do you think is in most pain, right scenario, right?
You're having like the best day ever. It's sunny out. You got a promotion at work. It's Friday, it's date night and you're so excited to go out and you're running around. You're getting ready. And you found the perfect outfit and your date rings the doorbell and you're running to the door and you stub your toe.
That's scenario a scenario B. It is raining. You got looked over for a promotion. You get home and realize you have no food. So you throw a frozen pizza in the oven. You forget to put on a timer and you've realized you forget to put on a timer when your smoke alarm goes off, you're running to get the pizza and you stub your toe or running to get the pizza, which toe, which toe do you think hurts the most?
I would imagine it's the one who has been suffering all day,
the one that's been suffering.
Right. And it's because, you know, you hurt your toe the same, but your mood was so bad when you did that, that that's going to be more frustrating scenario, a you probably moved on and I was like, ouch, that hurt whatever.
But you kept running to the door and you continued with your day.
Yeah, you're looking forward to the date. Your we've had a good day. Yeah, absolutely. It's the, um, there's I forget the name of it, but there's a stress model. Um, that cause a really thorough explanation of how. When your cup, you can kind of imagine a cup and if it's filled to the brim and something happens now, it's spilling over and filled with the brim might look like I've been in pain all day already.
Right? I had a bad day at work. I didn't get enough sleep last night. I didn't eat enough today. All of those things start to make this cup heavier and heavier and then stubbing your toe. It literally is like the last straw. Right? Screw it. I don't even want to go on this date anymore because this is the worst day ever.
But if, yeah, if your cup is pretty, you know, you ate enough that day slept enough. You had, you know, a really good day, then you can handle that stress a little bit better. And I just, again, always want to reiterate this isn't about choice and this isn't about mindset. It's literally. Okay. So if you did have a really shit day, and now you stub your toe and you don't want to go on the date anymore, this is a whole other topic about values and kind of what you want to do next.
Like, I still think you can, you can figure out a way to go if it's that, if it's important to you, but it doesn't have to be important to you. Right. You can also cancel. You can also say this is not working tonight and I just need rest. Yeah.
Yeah. And it's, you know, listening. To your body and respecting both your mind and your physical body, what they're saying, and, you know, being mindful of where you are both mentally and physically and giving both of them their time of day.
Yeah.
Yeah. Jennifer, is there maybe one thing you can kind of, um, give here at the end to people listening? Just kind of either provide some hope or maybe it's something that you hope people take away from what you've said so far today.
Yeah. Um,
I think that pain is not a finite state. Pain is very fluid. And I think we imagine it as a very rigid thing that we feel at a very high state, a hundred percent of the time. But it's very fluid and we can take advantage of that and we can learn techniques and we can really, you know, feel power and that to learn to separate that pain from the suffering and learn to take the good days with the bad.
And learn to live beyond your pain, because you are so much more than just pain or an illness. There's a person under there too. And sometimes we forget that
I love that pain is fluid. It just reminds you to go. It goes back to what we were just talking about. You don't have to stay in the pain to prove anything.
It, it does go in and out and up and down, and that doesn't make it any more or less, more or less real. Um, when you're feeling better.
Yeah.
Thank you so much for that.
Listen to Jennifer’s interview with me, Destiny Davis, on Ep 4: This Is What Real Advocacy Looks Like, Chronic Illness Edition with Jennifer Sutton M.ed LCMHCA NCC
Jennifer Sutton is a licensed clinical mental health counselor associate and founder of Chronic Hope Counseling and Chronic Hope Cares. Jennifer shares her journey with chronic pain and her mission to empower others in the chronic pain community to advocate for themselves. In this blog post, we'll provide an overview of their conversation, highlighting key insights into chronic pain, advocacy, and the valuable work of Chronic Hope Cares. Jennifer Sutton, a North Carolina native, grew up in a small community in Pittsboro. Her personal experience with chronic pain, spanning over a decade, fueled her passion for helping others who face similar challenges. Jennifer recognized the isolation and lack of resources that often accompany chronic pain and illness. In response, she founded Chronic Hope Counseling in 2019 and later established the nonprofit organization Chronic Hope Cares in 2021. Her goal is to create a safe space where individuals in the chronic pain and illness community can learn to live beyond their pain.
Connect with Jennifer:
Meet Destiny - The host of The Chronic Illness Therapist Podcast and a licensed mental health therapist in the states of Georgia and Florida. Destiny offers traditional 50-minute therapy sessions as well as therapy intensives and monthly online workshops for the chronic illness community.