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So many of the resources about chronic illness are for the adults – but how do you explain things to a child with chronic illness? Our guest today wrote a children’s book aimed at explaining the concept of chronic illness to a child – in a beautifully inclusive way that encourages bravery and confidence for both the child and caregiver. Mindy is also sharing with us the honest, vulnerable, and loving side of the story from the caregiver’s perspective. This look behind the scenes of what the parent, or partner, or friend is going through when they love someone with a chronic illness – when they don’t have an illness themselves.

Guest Spotlight: Mindy Wilson

Mindy Wilson at her book reading

Mindy Wilson is a mother to three, a student, paraeducator, author and inspirational speaker. Her passion in life is to help families find freedom within a chronic illness and advocate for children. Her journey with her child that has suffered with pediatric migraines since the age of 4 started 7 years ago.Mindy will not forget the day when her daughter was diagnosed after many tests and feeling so lost and scared as a parent. Through trial and error, they  have learned together. Mindy wrote her children’s book called Jane Leaps Through Headaches to support families, educate and most importantly show kids with courage anything is possible.

Get her children’s book! Jane Leaps Through Headaches: With Courage Anything Is Possible

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Transcript

NOTE: This podcast was transcribed by an AI tool. Please forgive any typos or errors.

Mindy Wilson

[00:00:00] Welcome to the live your life, not your diagnosis podcast. I'm Andrea Hanson, author, motivational speaker. And master certified coach. When I was diagnosed with multiple sclerosis, I was told. I would never reach my goals. But I did. And I'm on a mission to prove that life with a chronic illness can still be expansive and quite remarkable.
Everyone has their own unique path. I'm talking to people, living with a chronic illness that come from different backgrounds, have different points of view and are achieving amazing life goals of all kinds. Do you inspire you? To achieve what you thought was impossible. These stories are raw. Uncensored and judgment free.
This means that there may be some adult language sensitive topics and
possible triggers for listeners. Listener discretion is advised
Andrea Hanson: I am here today with Mindy Wilson. Mindy is a mother to three. She wears many hats as a mother, student educator, author and [00:01:00] inspirational speaker. Her passion in life is to help families find freedom within a chronic illness and advocate for children. Her journey with her child that has suffered with pediatric migraines since the age of four started seven years ago.
Mindy will not forget the day when her daughter was diagnosed after many tests and feeling so lost and scared as a parent through trial and error, they learned together. Mindy wrote her children's book called Jane leaps through headaches to support families, educate, and most importantly, show kids with courage. Anything is possible. Mindy Wilson, how are you? Welcome to live your life, not your diagnosis.
Mindy Wilson: Thank you. Thank you for having me.
Andrea Hanson: I'm so glad you're here. I love so much to talk to you about so much to unpack. I'm really excited to have you here offering your perspective to our listeners because I think it's so it's so needed. What I love about you and what really [00:02:00] made me want to talk with you is the fact that we have similar.
Purposes. We have similar passions in that we both want to help people with chronic illness realize that they can still do anything. They can still go after their dreams. They can still go after their passions. They can still move through life and they don't have to to think that their dreams are over because they have this chronic illness.
And I love that you advocate for this
Mindy Wilson: I think you hit it on the head. And
I think the biggest thing is they don't have to, they can see that the world doesn't have to shrink. They can still do everything else that anyone else can do. Maybe just in a different way than I have to tweak things, but there's still possibilities.
Andrea Hanson: There's absolutely tweaking because we all have our unique situations and our unique pathways and different hurdles to get over. But so does everybody,
Mindy Wilson: Yeah, if my daughter [00:03:00] has a really down day that's what I try and tell her. , we all have something you, you, you can't always see it, but that other child walking through your school, they're probably going through something too. You just don't know it.
Writing your story, especially a story that's so close to your heart and putting it out there in the world. That takes huge courage in itself. So tell me a little bit about what made you take that step to write your book and become an advocate.
Mindy Wilson: I had an opportunity really come along with a publisher and then pitched. My story and it was , I love it. And then they started talking to other people other parents and they were , Ooh, that's, that's a really good idea. it just kind of slowly came along and an opportunity came and I snatched it up and was , okay, I don't know what this story is, but. [00:04:00] I know me my daughter's story. So I can definitely give you that perspective from our story. And yeah, and it also was something I wanted to share too, because I remember feeling so alone at four when she's was diagnosed.
And if there would have been a book for me to read to her, or for me to read, not feel so alone. that would have helped so much at the beginning.
Andrea Hanson: I think you hit it on that, on the head. There's a lot of things to research and read for the adult that's diagnosed or going through a diagnosis, but to have something to read to your child, your young child, that's going through this, I think is invaluable.
Mindy Wilson: Yeah.
cause I know a lot of the books when I first started writing my children's book, I researched other books and a lot of the books on migraines are adult and they have a lot of big [00:05:00] scientific words and that kids aren't gonna understand. I mean, you can read it as a parent, but the child is still trying to understand just what it is in general.
, I didn't find the children's book really out there that I felt encompassed the kids' perspective, the parent's perspective and prove that you could do a sport
Andrea Hanson: In the book. Jane is trying out for gymnastics.
Mindy Wilson: Yeah,
Andrea Hanson: Which is, that's a, that's a big thing. I'm not a gymnast.
Mindy Wilson: me neither. This is when
Andrea Hanson: So
Mindy Wilson: it.
Andrea Hanson: to me, that sounds huge, a huge, huge thing. So talk to me about when she was diagnosed, was that hard to get a diagnosis with such a young child? Did you, did you have to wait for a while?
What was that ?
Mindy Wilson: It was hard and I'll try and make this short. But I, but I do remember the day she was four and just, she started she, [00:06:00] she wasn't quite in preschool yet, so it was this summer before she went to preschool
and she , everything was going fine. And. Halfway into the day. She just started puking her guts out
Andrea Hanson: you can say, puking hear out
Mindy Wilson: Okay. And screaming, in terrible pain. And I was , oh, , I don't know what this is. , I have older kids, but I'm never experienced this before. And so I rushed her to the just family pediatrician and they were , we have no idea what's happening. So I'm , well, that doesn't help. So they sent me up to our home town, to the university children's hospital and they did scans and I think she had five tests, just to try and figure it out. And they were , well, her brain looks fine, everything looks fine. And that's where I realized a little tiny bit. I got an advocate a little [00:07:00] bit, because she's obviously not fine.
,
and so we went back to the pediatrician and they went over the results and then I really owe it to the doctor's assistant. Cause I was in tears and I was , I don't know what to do. someone give me answers or something. And she was , you know what, all the symptoms I had as a child with a migraines. So I wonder if it's that. So between the test coming back fine and getting in touch with the neurologist, I kind of went into mom mode. And searched a little bit to see if the assistance, what she was saying to me, symptoms added up with what my child was experiencing.
So that's kind of how it started.
Andrea Hanson: And so talk a little bit about your daughter's diagnosis
Mindy Wilson: so migraines and headaches are tricky because they don't really [00:08:00] diagnose them. I think, I think it took them a year or two where they're , okay, this is, this is probably it, and that was after talking to neurologist and doing their own test and telling it to him for a little bit.
So I want to say it was probably a year after. But in my mom mind, and my research that I did on this side is , well, this, a lot of it lines up,
Andrea Hanson: Yeah. That's a lot of, of how it works is that we have, especially through the research that's available right now, a lot of times you kind of are leaning towards this hunch of , I think it's this. And then the doctors kind of are behind us
Mindy Wilson: yeah,
Andrea Hanson: , well, hold on. Let's do tests.
And then they, they come across with the diagnosis.
Mindy Wilson: I mean, , it was a hard, it was a hard diagnosis.
to get.
And I, I do remember thinking and looking at my daughter, she was four, [00:09:00] almost five at the time. she had no clue what was going on. And inside as a mom, I was , well, what does this mean? , do I have to wrap her in a bubble?
And she can't do anything. And this is where my passion comes out. Okay. I think all parents start out that. , do I just not let them live life and try and
protect them the best I can. So it, it, , I was, I was terrified the first two, two years I, I was, and I didn't have a roadmap
I didn't have any other , family or. Anybody on the outside world of this diagnosis. And I knew to kinda help me through that.
Andrea Hanson: So tell me what that was . Cause I know when a parent has a child that has an illness there's a grieving because your idea of what you thought your child's life was going to be is now completely different. Just when someone with a [00:10:00] chronic illnesses is, diagnosed or at that moment, they realize that their life is no longer going to be the same.

Mindy Wilson: A little looking back. I, I mean, I think the first two years was kind of in denial and
, oh, it's not that
big of a deal. Until the really bad days came of having to take her to the hospital to get an IV, to, to stop it. But I wanted my child just to live in every ordinary child's life.
,
I didn't want her to struggle more than she had to. So me grieving the process. I had to slowly learn to let go and be , okay, I can't take this. I can't take it away from her. I can't fix it. So we're going to be sad for a little bit, but slowly I just learned tricks along the way and started to let her do stuff the picture of her not having a trouble childhood and just being able to do whatever[00:11:00] I had to come with the realization that that's, that's not going to happen.
Andrea Hanson: You say you had to learn tricks? What tricks did you learn?
Mindy Wilson: We found oils along the way. The biggest thing. That I was skeptical of was chiropractic care. I started her on that when she was five and she's been going every month since then. And ibuprofen, when you get a diagnosis, they gave her medicine to take overnight.
But anybody that has a chronic illness will probably say. it doesn't always help or take the pain away. I think we all have to find other avenues that might help, even though it's not directly from the doctor. So ibuprofen was a big one for her to this day. She's still, she'll go to ibuprofen over anything else. And oils, peppermint oil, lavender, aroma therapy. I found that they have roll-on ones that you can just [00:12:00] roll on their forehead or you can roll under an under their nose and just let them smell it. So they kind of, they can smell it as it's happening. They also do have bracelets for little kids too, that I found her. Awesome. You can just pour the oil, into it and it will last for six hours and they can smell it.
Andrea Hanson: Is that her unicorn bracelet in the the
book.
Mindy Wilson: is. Yes. Yep. So,
Andrea Hanson: I love that it's in a unicorn bracelet for, I w I'm , I want a
unicorn bracelet.
Mindy Wilson: Right. They have some cute ones for a little kid, so it doesn't make them feel so. out of place at school and stuff.
Andrea Hanson: So as you learned these tricks and learned how to deal with, I guess, the symptoms of the migraines, was that something that allowed you to feel you could process? Okay, she's got this.
Mindy Wilson: Yeah. And I think it didn't happen all at once. every year. Want to say I [00:13:00] got a little new found confidence, cause I was , oh, that's helping this time. I do want to say this stuff, doesn't help all the time. Really each parent's and child, they , they have to find their own kind of rhythm. What may work for someone else's not going to work for the next person, because
their bodies are so different. So. It was a, it was a lot of trial and error. And I think every year, if I found something , oh, , okay, we can get through this. But I said, , we still have really bad days.
And with migraines, sometimes they can be abdominal. So it will cause a lot of puking for , it can be six hours straight. So there's, there's kind of different levels of it with my daughter. There's days that she can just sleep for a couple hours, take ibuprofen and she can wake up and she'll be off to the going to gymnastics. There's some days where she will lay there and uh, [00:14:00] vomit a few times and be super frustrated and be , why is this happening to. And, and that's hard cause I
I cry with her a lot because I don't know. It's just one of those things and ly you have to, you have to get through it.
Andrea Hanson: As a caregiver. What tools do you use for you to get through those harder days?
Mindy Wilson: Breathing, that's always good sometimes
Andrea Hanson: Luck, never underestimate breathing.
Mindy Wilson: right. We get so more up into , just caring for them that I think we forget to step back for a minute
After they're okay. And on the mend I think it's the best way to put it a lot of mindfulness. I, I try and remind myself
she's looking at me for courage to, she's looking at me to, to figure this out with her and to help guide her. And we're [00:15:00] learning together. I don't have all the answers, but it's it's journey that we take on together. And just self care, you really have to. Take time for yourself.
Cause it's hard and it's stressful. And if it goes on for six to 12 hours and the night ends with leaving the ER, then the next day I try and do something for myself,
whether it be read or a bubble bath or to write, because I do love writing that kind of helps release some emotions to get out. Whatever, 10 minutes you can get in, tend to decompress. I find helpful.
Andrea Hanson: and I think, especially from that. Caregiver point of view. And I really, I mean, I really actually think for everybody, there are tools that we have that we gather as we [00:16:00] go, as we figure out what our path is and what works for us and maybe what doesn't work for us. And so we have this huge. Toolbox,
Mindy Wilson: Yeah. And my toolbox was super tiny, right.
when she was four,
now I can say I have a pretty good toolbox. It's definitely grown a lot since when she was four. I think I wanted all the answers and I wanted someone to give me a pretty little wrapped up box. But I learned really quick that that's , that's not how it works.
as a caregiver, how do you look for support for yourself in this role?
Mindy Wilson: yeah. Good question. I have a lot of good family members that are theirs to support if it's been a long day they'll be , watch. You, you go do something that was a rough day or a rough night with her. [00:17:00] And support groups are always a really good thing to invest in. There's , there's a lot of good support people that have stepped up being friends, family that have kind of helped me. Care for me, after, when I was a hot mess after she goes to the ER or we just
have a really bad day and it's frustrating.
Andrea Hanson: Yeah.
Do you find that. hard to ask for that help.
Mindy Wilson: Yeah.
it was hard. And I think it depends on who you are. I'm a person that does. Love to ask for help. I'm a mom. I , I can do it all. It's fine. I got it.
Tight type of personality, but I've also learned that it gets so much better to ask for help. So I, I do, I will call up a family member and just be , Yeah. I'm tired.
, I, I need help. Or I need help. To watch my other kids. [00:18:00] Why get her to the ER and, or I need some sleep, stuff that. So it's become easier. I'm not going to say it's super easy, but it's definitely become easier because I know now that I can't, I can't do it on my own. It's it really does take a village.
When you have someone with a chronic illness. To be able to on when you need them.
Andrea Hanson: Yeah. I think it takes a lot of courage to ask for help. I know for me, I was never one to ask for help. I had everything figured out. I've always, I was. With everything figured out.
And so it's humbling to ask for help because you don't know, even if you know, you're going to get help, you're asking someone, that's going to give it to you.
You're not entirely sure that there's this, at [00:19:00] least for me, there's this voice in the back of my head. I'm , what do they think? What are
they thinking about? Why I need this help? What are they thinking about what's going on? And, and so I found that not only asking for help Was a really brave step to take, but also knowing how to ask for help.
Mindy Wilson: Yeah.
Andrea Hanson: was a way to ask for help. That's a lot more constructive.
Mindy Wilson: Yeah.
And I think we're kind of still figuring that out. Me and my daughter, because she also doesn't love to ask for help. But she's kind of had to learn, oh, sometimes I really need to ask for help.
I need to raise my hand and be , I need to go call my mom and get some medicine,
um, and kind of take that initiative. It's it's scary to ask for help. And I've, I've seen it with her a lot. She, she doesn't want to feel different. She doesn't want to burden anybody. Um, so that's a [00:20:00] process and I, I think we're still in the middle of that
Andrea Hanson: I think there's something really loving about the fact that you are so open to the fact that you're still learning and your daughter is still learning and you're still learning. Together. It's a very vulnerable place to be, because I think a lot of, a lot of parents, a lot of caregivers feel they're the ones that are taking charge.
They're the ones that are getting the answers. They're the ones that have the answers. They can do all the things and to be able to step back and say, I'm still figuring this out. And my daughter knows that I'm still figuring this out and we're doing it together. I think that. It was a very loving place to be.
Mindy Wilson: Well, thank you. Yeah, no, it definitely. It, it takes effort on your part as a parent, but grace comes to mind the word grace, think it, give yourself a little bit of grace in that space. And I think, I think if I were to portray to [00:21:00] my daughter I know how this is going to go. And then, and I know everything to do for you. At some point, she'll probably look at me and be.
Uh, Come on mom. she would probably catch on it's, it's good to feel confident, but also know that it's okay to not know what you're doing. it's okay to learn. And I think children are capable of understanding things a little bit more than we give them credit for, and. I feel with their chronic illness, I feel she's had a better experience going through it with me and not being , I'm going to tell you what to do. they know we're going to learn this together cause I need your help and you need my help. So it's a team effort.
Andrea Hanson: I think it's also probably a way to empower
Mindy Wilson: Yeah. And I think that's with gymnastics too. I don't think she would have been empowered to be okay to go with this sport if we [00:22:00] didn't do this together.
Andrea Hanson: How do you do that?
So in gymnastics, Upside down, you're flipping around doing things.
How is it that you, you handle your own emotions and you handle supporting her when you're probably worried
about, Is she going to
get a migraine?
Is she gonna,
Mindy Wilson: yeah, no, listen.
I'm, I'm terrified. It's the anxiety has gone down a little bit because it's been eight years. But I'm still terrified when she does her swing on the uneven bars and she goes upside down, really? That split second I'm , well, what happens? My mindset will go to that. If she, , if it comes on quick, . I think I've just grown in confidence that, that she's a tough cookie. And
With all the pain that comes with headaches and migraines, she, she will probably land [00:23:00] it. Maybe not the best way, but she won't break anything. I'm sure. , she'll figure out a way to, to get through it in that moment.
Andrea Hanson: Yeah. And I do think that, you know, when it comes to chronic illness and I say this all the time, there is That initial trauma, that initial grief that needs to be processed. And then when we move through that and I've seen it so many times, and I think it's a really amazing thing you can start to really own the fact that having a chronic illness makes you a tough cookie.
Mindy Wilson: Yeah.
Andrea Hanson: you said, right? It, it develops you into someone who can handle a lot of really tough things quite often before you're ready
Mindy Wilson: Yeah, no true. Cause I, I can, tell you that she was not ready for that day when it came upon us. and the pain she experienced. She [00:24:00] she was not ready. I was not ready.
So it is a process and I think we all need to be kinder to ourselves.
Whether it's the child going through their chronic illness or the parent, trying to figure it out and process the trauma. And there's still times right when she does gymnastics, that trauma will come back and it'll be , oh, no, that, that will also have flashbacks to the hard times that I have with her. When we go to the ER, that's, that's traumatizing for
both of us,
It kind of brings us back the reality of, oh, you do have a chronic illness and this is going to be part of your life,
Andrea Hanson: it makes the caregiver a tough cookie too.
Mindy Wilson: yeah, it's kind of a running joke with me and her. you realize, , I wouldn't be this tough if it wasn't for all. The medical stuff that I've gone through with you. And it's also bonded us super [00:25:00] close. we have a very good relationship cause we, we both had to be tough cookies and we both have had to figure it out.
And there's days where we're not listened when we're not tough cookies. And I crying my pillow and I'm why?
There's days where she just cries. Hates it and screams and pours out her soul to me and asked me why. So,
Andrea Hanson: but you know what, that's what a tough cookie does too.
I get it. I'm a mindset coach. I love mindset, but that's not the only thing at play. Right. We have emotions and emotions are very, very important. And I think that for a lot of people and I was this, I didn't know how to process emotions until after I was diagnosed.
And I realized that it was a very important thing.
Mindy Wilson: Yeah.
Andrea Hanson: And I think that processing emotions can be very hard.
For people, especially
in the beginning, especially if you're not used to it. So I think, I [00:26:00] think crying into your pillow and screaming and being angry and talking about it and being vulnerable. I think that's all part of the tough cookie
lifestyle.
Mindy Wilson: no, it's probably part of the ingredient. This is
Andrea Hanson: So talk about that. How do you, so you have two other kids.
So how do you handle this with the rest of your family? How do you bring them in? How do you teach them? tools are you giving them
Mindy Wilson: Yeah.
Andrea Hanson: work with a family member?
Mindy Wilson: So it's, it's been interesting because she's the oldest, she has two younger brothers. So they've have kind of grown up watching how that world works a little bit. I think I'm, I'm open with. I'm not, I don't, I don't just say, well, she's just having a bad day. she's having a migraine episode.
You're gonna, you're going to have to be a little quiet. And trying to explain to them kind of at their level. The eight year old, I can explain a [00:27:00] little bit more kind of what's going on, maybe in her brain a little bit, but the four year old, I just have to be , sister has to sleep. And the kind of the fun thing about it is now.
If they know she gets a headache and she starts crying and they can kind of sense it in her face, both of them will usually bring a bowl to hurt if I can't, if I'm not there to do it right away
and be , here you go, in case you need it. So they just have kind of grown up, seeing. , and I'm never sheltered them.
I don't hide any of it from them.
You're raising two sons to be in a world where people have chronic illness and this is what it means. And this is you're modeling how this is how we feel about it. This is how we.
Mindy Wilson: Yeah, no. Cause in the, in the future, I mean, they're, they're gonna, they're [00:28:00] gonna come across people that have a chronic illness and them to be loving and understanding and also realize that you can't always see something, but it doesn't mean that. , that person isn't going through hard stuff or pain. And to, to be there to help them. Cause they're , they're human too. They, they just, everyone just wants the same in life. we all just want to be happy normal in quotations. so
I don't shield them from things I want them to see. out there and that's okay.
Andrea Hanson: Is that the same type of stuff that you talk about when you go and speak to other parents or
Yeah, I haven't done a lot of speaking, but at the schools too, I, my children's book is I'm at the school that I work at and it, gets read around by the counselor to just show inclusion and awareness They're still the same kids. ,[00:29:00] you, they, they. I have to tweak their life a little bit, but that's, that's one of the biggest things. Um, I talked to them about, cause, cause it can be lonely. So I want, I want kids and families with chronic illness and not feel so lonely. As your daughter is getting older. Cause she's 12
Mindy Wilson: 12. Yeah.
Andrea Hanson: So is she. Is she feeling more comfortable talking to people or people feeling more comfortable coming to her? What does that communication
Mindy Wilson: yeah.
She she's getting better. it's, it's still a process. She's not 100% there. But she is getting better at talking to the teachers and communicating when her head hurts and When she needs to just stop and leave school. and I think the older she gets, the teachers are more understanding [00:30:00] um, with communication.
I think that's the important part comes in with the parents. And if your child's in school is to just have that open communication, I think that has helped her. Understand ?
oh yeah. I do have a voice and I can, I can ask for help or I can say, I need to go with a drink. That kind of thing,
because I try to be open with them.
And in return, they're more open when I talk about it and don't put it as kind of a stigma. I think that you can get with a chronic illness.
Andrea Hanson: Right. Yeah,
for
sure.
I think that's great. It's that modeling it's a life lesson. It's all about showing people how to treat you,
Mindy Wilson: Yeah, no modeling is the right word. Yeah. Modeling is huge. And it can be scary at first. I mean, I was
always terrified. But now I've, I've kind of gotten in the rhythm, modeling [00:31:00] is not only helping the people around her. It's helping me. It's helping. Others that don't know a whole lot about it. it's ultimately, I think showing her to not be ashamed of it. And it's just part of who you are.
Andrea Hanson: Yeah, and I think it's something, again. I think part of what chronic illness can give us besides a lot of stuff that we just don't want,
but it can give us an opportunity to learn how to show people, to treat us. And it's not just. In terms of our chronic illness and our needs. It's, I mean, moving forward, it's growing up in life.
It's in, you know, with your own family or your own relationships or your own or the other people that you come in contact with. It's something that you learned that you can apply to every single area of your life.
Mindy Wilson: Yeah, no, I mean, and she's gonna get older, so right. I think about that as a [00:32:00] parent, when, when she goes to get a job or going through college or school and that kind of thing, it, it will affect every part of your.
life. So modeling is huge. And I think that's what I want to do for her most. Cause I can't, I can't feel her pain.
I don't have headaches, I don't have migraines.
So I can't feel what she's feeling in those moments. I'm not, I'm not her. So the best I think I can do right now is to model and be proactive and be an advocate.
Andrea Hanson: I think that's such a good example because a lot of times when we do have, you know, loved ones, their caregivers, or just relationships with people in your life, they don't know what you're going. They don't know what pain you're in or, you know, again, I bring it back to the invisible illness.[00:33:00]
I know for me, when I, especially in the first years after I was diagnosed, I remember thinking that people would say things , oh, you look great. And they would. Just kind of treat me I was fine. And I'm , you have no idea.
Mindy Wilson: Yeah.
Andrea Hanson: you with both my eyes right now, you have no
clue.
Mindy Wilson: Yeah.
Andrea Hanson: if I have maybe one more hour of energy and then I'm going to be in bed
Mindy Wilson: And we've gotten that a lot too, especially in beginning, but the support and the people that know her and have been a big part of our life. of learned with us. But in the beginning, yeah. I've had people say that exact same thing to her, , oh, she looks fine.
I'm , oh, but you have no idea.
on a scale from one to 10. Um, What her brain is actually feeling right now, what her body is reacting to. you you can't see it.
Andrea Hanson: Right. And it's tough because there's this [00:34:00] moment. And I don't know if, you know, if, if your daughter has felt this or if you have felt this, but there's this moment where you're, you need to say something, you need to advocate for yourself. You need to model how to treat yourself or any one of those things.
And you're talking to someone who initially just doesn't understand, because they're looking at you.
Mindy Wilson: yeah.
With that look. Yeah.
Andrea Hanson: fine. And you have to almost tell them, , believe what you're seeing, believe what I'm saying. And that's a really hard
Mindy Wilson: Yeah.
Andrea Hanson: to, to come up and tell people,
Mindy Wilson: Yeah. And I don't think I've ever gone into , the big, great story of her chronic illness with anybody. I don't do the bare minimum, but. I can tell him they get that glazed over face . So I'm just going to give you the the basics. A lot of it, I have to do it.
When we go into the ER with the IV stuff, they give her to be this. This is what you need to give her. This is from [00:35:00] neurologist and this is what you need to put in her. And turn the lights down. She
She may not look it's bugging her or she'll be the child that's going to be , no, I'm fine.
, I'll suck it up. On the inside, I know her eyes
are
Andrea Hanson: Yeah,
Mindy Wilson: So turn the lights down that kind of thing
Andrea Hanson: a lot of people that I speak with that have a chronic. Will express to me that they are worried about being a burden, especially if they have a parent that they're leaning on or a spouse or family or a friend or they know they have boundaries that they have to put up because they know it's going to be a situation where people are going to treat them it's, it's totally normal and they have to.
Raise your hand and say, no, wait, I need this to be different in order for me to join you because I have, you know, not as much energy as you, or I need this to be in place because I can't, you know, loud [00:36:00] noises are hurtful. And so they feel they're too much. They feel they're a burden. So as a what would you say to people who were.
That they're a burden on their loved ones because they have a chronic illness.
Mindy Wilson: Um, This, this is, this question is going to bring me to tears. No, know, that you're not a burden. It takes a strong person to be a caregiver too,
it also takes a strong person to , raise your hand and be , I need this done.
so I could feel better in this environment.
Andrea Hanson: What I've seen is as a friend of somebody who has a chronic illness, as you know, cause I, one of my dear friends has a chronic illness, it's it? It's an act of love to be able to give them what they need or to their boundaries
Mindy Wilson: Yeah.
Andrea Hanson: what it is that they. [00:37:00] Um, to require in that
Mindy Wilson: Yeah. When someone's helping you, it's , I, I think you have to know it's out of it's out of love.
Andrea Hanson: yeah.
Mindy Wilson: And
by letting them help you. It also helps educate, I think, in teach the others around you. And it kinda, I feel it can kind of open up a world and people will be able to talk about it more and kind of understand.
So yeah. Let, let them love on you. I think is my biggest thing. Let them. it may feel that on the inside. I know it can feel that I've, I've seen it in my daughter where she was , no, I don't want you to help me. I just couldn't do it on my own. And I had to be , no, but I want to help you.
, you're not burdening me. , let me help you. Cause then I'm re I'm learning. And when I go talk to people, I can share that.
Andrea Hanson: Let them love on you. Because that [00:38:00] feels good to be able to love on a person. We all know what it's to love on a person. And it feels really, really good
Mindy Wilson: Yeah. It's, it's about being vulnerable, I think. And, and not caring so much. About what you think others are going to think? Cause that's
probably not what, they're not what they're
Andrea Hanson: Yeah. Well, Mindy, thank you so much for giving your time talking to those of us who are wondering, what is it for a parent, with a child with chronic illness or for the caregiver, with a child of a chronic illness? I think you have really opened up that world to let people know. I think, you know, where we ended.
Was the perfect place of caregivers want to love on you? Let them love on [00:39:00] you because it fills them up as well. And it can be such a great relationship to learning and understanding and educating and creating a world, raising children and creating a world where chronic illness isn't, doesn't have such a stigma and is more accepted in
Mindy Wilson: Yeah.
Andrea Hanson: Whatever form. It takes it looks .
So thank you so much.
Mindy Wilson: yeah, it's hard being a caregiver. It's exhausting. Um, there's Bad and there's good days, but
it's, it's so rewarding to, to, to see that person, child or adult realize that they, they can go on and they can live us still productive life. Just have to, tweak it.
Andrea Hanson: Yeah. You just have to get used to doing things a little bit differently,
Mindy Wilson: Yeah.
Well, no, thank you for having me. It, it [00:40:00] was great to talk about Thank you for tuning into this episode of Live Your Life, Not Your Diagnosis. If you like the show, don't be shy. Please give us a five-star rating and review. Follow us on apple podcast, Amazon music or wherever you're listening right now. To see complete show notes and resources mentioned in this episode
visit AndreaHansonCoaching.com. Thank you for joining me And until next time take care

About Live Your Life, Not Your Diagnosis

Live Your Life, Not Your Diagnosis podcast

Hear inspiring discussions with people living with chronic illness. These people went after their passions and big goals -even when everyone told them they couldn’t. Listen to stories of resilience and gratitude in the face of uncertainty.

I’m your host, Andrea W. Hanson, Author, Motivational Speaker, and Autoimmune Rebel living with multiple sclerosis. You’ll not only fall in love with these guests, but you’ll soak up positive mindset tips and ideas to find your own unique path to success.


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