Choosing Friends as a Rare Disease Parent - Building a Supportive Circle with Genuine Connections

[00:00:03] I'm Effie Parks. Welcome to Once Upon a Gene, the podcast. This is a place I created for us to connect and share the stories of our not so typical lives.

[00:00:14] Raising kids who are born with rare genetic syndromes and other types of disabilities can feel pretty isolating.

[00:00:20] What I know for sure is that when we can hear the triumphs and challenges from others who get it, we can find a lot more laughter, a lot more hope, and feel a lot less alone.

[00:00:31] I believe there are some magical healing powers that can happen for all of us through sharing our stories, and I'll take all the help I can get.

[00:00:43] Once Upon a Gene is proud to be part of Bloodstream Media. Living in a family affected by rare and chronic illness can be isolating, and sometimes the best medicine is connecting to the voices of people who share your experience.

[00:00:56] This is why Bloodstream Media produces podcast, blogs, and other forms of content for patients, families, and clinicians impacted by rare and chronic diseases. Visit bloodstreammedia.com to learn more.

[00:01:08] Hello and welcome to another episode of Once Upon a Gene. I'm your host Effie Parks, and I am just so grateful that you're choosing this time in your precious, precious day where I know you're probably worn so thin.

[00:01:20] I'm so grateful to listen to me to come here and have some connection on rare disease. I do this show for you, I do this show for us, and I'm just so thankful for you.

[00:01:28] So thanks for sharing my show whenever you get a chance. Thank you for writing, rating, and reviews that helps people decide if they want to listen to this show. Let's keep it going and cast out these lifelines for those who need it because we were all once there before.

[00:01:40] So lately I feel like I've been seeing a lot of posts online about friendships. You know how you just sort of notice some themes sometimes when you're online?

[00:01:49] And I feel like I've been seeing so many of the posts being about, like, how do I do this? I don't relate to my friends anymore, or my friends don't even ask about my kid, or they pretend like it doesn't exist,

[00:02:01] or they minimize what I'm going through and I just feel so upset, I feel so sad, I don't know what I'm supposed to do, I'm lonely, nobody gets me.

[00:02:10] Like, you know, we've all felt that. We've all been through that. And it's one of the worst parts about this.

[00:02:18] Like, yeah, sure. The impending doom of rare disease and having a sick child and everything being turned upside down and lit on fire is very serious.

[00:02:27] But I feel like some of the biggest gaping gashes is that ghost ship of people that sort of disappeared or didn't show up how we thought they would show up.

[00:02:38] And that one, that one hurts. And it hurts for a while I feel like and I think it will probably continuously show up here and there for all of us.

[00:02:46] How long the span of our rare disease life and it's an important topic to touch on. So I thought I would just throw in a little bit of my two cents today because I just, I find it so important.

[00:02:56] So yeah, like what do you do? What do you do when your circle of friends doesn't really get your life?

[00:03:02] It's totally a question that so many of us face all the time. And again, it can be really emotional. I'm getting emotional about it just thinking about the first couple years where I felt so betrayed or I felt so isolated.

[00:03:14] I had a lot of friends and I had a lot of clients. I'd been surrounded by people my whole life. Again, I'm one of 13 children.

[00:03:21] My son was the 30th grandchild. Like I have never been alone. So that was a real big stark kind of awakening for me to kind of look around, even if people were calling me and leaving messages that I wasn't responding to.

[00:03:36] I still felt alone and I felt like nobody got it. And it was really difficult. I've been there. I know you've been there.

[00:03:41] I felt that loneliness of being in a crowded room with people that you care about, that you love and still feeling like you are invisible and your story isn't recognized.

[00:03:56] And honestly it's one of the reasons, one of the million beautiful reasons that this podcast exists.

[00:04:01] I wanted to share sort of all of these aspects of our life along with of course the joy and the relief that a lot of it brings to. And part of that is the people that we find along the way.

[00:04:13] Just like finally feel like you're home, right? When you're around someone who knows what your life is like. It's a game changer.

[00:04:21] I think it's the number one prescription that families need is to find your people. Find the people that get your day to day and that doesn't mean you have to let go of your old friends.

[00:04:33] It's not about replacing anyone. It's about expanding your circle to include people that can share all the parts of your life now that are unique and maybe completely impossible for others to understand.

[00:04:46] You know, just like how some of my friends might have passions that are totally foreign to me that I just don't necessarily understand.

[00:04:53] It doesn't mean that I don't want to be around them but I'm probably just not coming on that little excursion, you know?

[00:04:59] So I like to think about it like that like sure so and so is not going to understand me yammering on about IEP meetings and trying to find a medication that's apparently on backorder

[00:05:07] and what's going to happen to my kid's brain if he doesn't get it in the next 24 hours.

[00:05:11] But maybe we connect on trashy TV and I get to laugh and I get to feel free and I get to feel like myself again.

[00:05:17] So I think it's kind of rearranging things and kind of plucking all that good stuff, right? Like this whole glimmer idea too.

[00:05:25] Where do you find these people? Hello? Once upon a gene.

[00:05:28] If there's anyone that has ever spoken to your soul that has been on this podcast send them a message.

[00:05:34] I promise you they will respond.

[00:05:37] I promise you they will be so grateful to hear from you because of course someone wants to know that their story or what they said resonated with you or impacted you in some way.

[00:05:45] Message those people who make the reels who really touch you.

[00:05:49] Go find the groups.

[00:05:50] I know Facebook groups have gotten pretty wild now.

[00:05:54] I don't know.

[00:05:55] You know, they're hit or miss.

[00:05:56] They can be way too large.

[00:05:58] They can be kind of a dim place compared to some other ones now, but there's still some really, really good ones.

[00:06:05] You know, typing in keywords to find the blogs.

[00:06:07] I feature a lot of other podcasters on this show and other people who write books and things like that.

[00:06:12] So kind of just digging in a little bit and using this beautiful thing called the internet that has brought our group, our families, families like ours way more of an ability to not completely be locked in.

[00:06:26] So I would say use this resource to find them for sure, especially if you don't have a way to really get out of your house and have a normal social encounter because I know that's next to impossible sometimes.

[00:06:40] But yeah, even in the waiting rooms, you know, like I feel like I've made really great connections before on the before and after visits for certain like PT appointments for my son or things like that.

[00:06:52] Like there's, there's a lot of different avenues that maybe we're stressed in or maybe we're checked out in or maybe we're focused so much on our kid or we're so tired.

[00:07:02] But sometimes those moments can be very quick and subtle and bring a lot of great connection when you're just sitting next to someone who you know, maybe sort of understands where you're coming from.

[00:07:14] But I know that I've been in moments where I've been so completely exhausted and emotionally drained from a doctor's visit or bad day all around from this life.

[00:07:24] And all I wanted was someone who understood like that one friend who could be like, oh my gosh, yes, that happened to me last night.

[00:07:30] And it's so funny because when I actually decide to like give in and just be like, this was terrible.

[00:07:37] I do want to complain about it a little bit and I send off that message to someone.

[00:07:42] I swear almost every single time they're like, yeah, uh-huh me too today yesterday doing that tonight.

[00:07:48] Like it's funny how parallel so many of even just our daily activities are between families and it just kind of lightens your load and it helps you brush it off.

[00:07:59] And obviously sometimes it's really important to dig into that hard deep traumatic space but not all the time.

[00:08:05] Sometimes you just need someone to be like, yeah, babe.

[00:08:09] I got you. It's a lifeline and someone did that for you once at least at some point.

[00:08:14] I guarantee there's someone coming up right behind you that could probably use something that you have now even if you don't feel capable of sharing that with someone.

[00:08:22] I bet you you have something valuable to pass on to that newest family.

[00:08:26] You know, I'm coming off of a wild kind of week.

[00:08:29] Actually, I took my daughter to a pink concert with my best friend and her daughter who's my daughter's best friend and totally separate from Ford.

[00:08:37] Right? Like I've had these girls weekend with my friend since I was 20 years old and now I get to bring my daughter on it and we got to go to a concert.

[00:08:46] I mean, we were matching outfits. It was ridiculous.

[00:08:49] It was just exactly what I needed and what I am.

[00:08:54] And I was so happy I got to share that with my daughter.

[00:08:57] And then tomorrow I'm going to a 50th birthday of my other old friend that was before Ford.

[00:09:03] And I definitely don't have a lot of the friends around me that I did before Ford because you know how it goes.

[00:09:11] Some just aren't really that good of friends.

[00:09:14] Some just aren't really that good of people.

[00:09:15] Some don't have the capacity to learn or understand. Some are uncomfortable.

[00:09:21] Some are just flaky. Like some friends are just for a certain time and that's okay too.

[00:09:25] They don't have to stay forever and learn about your big old life now.

[00:09:29] But I do feel super, super, super grateful and lucky to have these two particular friends who were with me before Ford

[00:09:37] because these two women remind me constantly of who I am and who I was.

[00:09:43] And I loved me, you know?

[00:09:46] So I think it's really important for us to stay connected to that because it's so easy to forget who we are

[00:09:51] and it's so easy to kick ourselves off of the serving platter of being cared for.

[00:09:58] So I think it is if you can, really important to find those people who knew who you were before rare disease came into your life

[00:10:04] because we have to keep as much of a grasp on a little bit of our essence as we can

[00:10:10] because I think it's really cool to see how that grows and where we come from

[00:10:14] to how we could take all of those experiences and really use them to be effective now.

[00:10:20] And also what to let go of about ourselves, right?

[00:10:23] Like it's a really great way to be like, oh yeah, I used to do this, can't even believe it.

[00:10:28] Like I think we just have a lot of clarity that we can really dig into in so many areas of our life

[00:10:34] and friendships is one of them and remembering who we were before our kids is one of them.

[00:10:38] But then again, yeah, these friendships that are us, you, me, the friend you text at three o'clock in the morning from Instagram.

[00:10:47] These other rare disease families who are raising these beautiful kids, they're not just for emotional support

[00:10:53] but therefore your overall well-being and I can't stress that enough.

[00:10:57] I mean, I think about so many of the friends that I have from just this podcast

[00:11:02] and do you have those friends that are like your Monday through Friday friends

[00:11:06] that you just call on the phone for no reason? Do you remember doing that ever? Do some of you still do that?

[00:11:10] I have like two friends that I just can dial at any time of the day to just be like, what's up?

[00:11:15] You know, like in between meetings, whatever. How's your day going?

[00:11:17] And we don't necessarily talk on the weekends. We don't live in the same place.

[00:11:20] We don't make plans but they're my phone friends, right?

[00:11:23] Like they're my friends that I'm like, oh my gosh, you don't know what just happened to me

[00:11:26] and then hang up by like I feel so infused. They make me feel so happy.

[00:11:31] I love having just like that little bit of someone on the other end.

[00:11:36] I'm like, I'm just so impressed with my life and it's also just kind of cool to really sort of parcel it out

[00:11:42] and realize how many different kinds of special friendships that you have.

[00:11:46] Cause it might make you feel less lonely cause I know sometimes I'm like, I don't have any friends.

[00:11:50] I'm going to like, ah, if he maybe this is the friend you need to call

[00:11:53] but it's going to give you a wake up call real quick.

[00:11:55] Yeah, I mean, I think there's some clinical evidence to having friends.

[00:12:00] Reduces your stress. Artilomers, they're on fire on both ends people.

[00:12:03] We have to take care of them. I think it makes you healthier because we're laughing.

[00:12:07] We feel loved. We get to be givers to other people.

[00:12:10] We get to like go on walks and in like have better care for ourselves.

[00:12:16] We get to encourage each other. We get to understand and support each other.

[00:12:19] I think that these connections and this sense of belonging and validation really help mitigate the feelings of burnout

[00:12:26] and all of the terrible things that comes along standard as being a caregiver.

[00:12:30] How just really encourage you to maintain some of those friendships and attain some of those friendships.

[00:12:37] I know that navigating the complexities of raising our rare kids is challenging,

[00:12:41] but I tell you, I promise you it is vital and start by being intentional maybe about the types of friendships you want to cultivate.

[00:12:50] Like maybe consider making a list of what you're looking for in a friend, you know?

[00:12:54] You might need the friend who doesn't have kids, who can come over and tell your husband or wife what to do and whisk you away

[00:13:02] and take you to margaritas and Mexican food. That friend exists.

[00:13:06] What you need that friend maybe, okay? To have just like that little bit of break and spontaneity.

[00:13:11] Or maybe, maybe you need a friend who's your couch friend.

[00:13:14] Who doesn't want a couch friend who can stay up and watch trashy TV with you if that's your thing.

[00:13:18] You know, the late night worry friend like I said, there's so many different kinds of people who share the love of random things

[00:13:25] and they also have a rare kid. So it's not just about, you know, constantly talking about being a rare parent and having this life.

[00:13:33] I know I'm kind of all over the place because I'm thinking and talking but what I'm saying is find those people who get your life

[00:13:39] but find another reason why you like them. Okay? Maybe that's what I'm saying.

[00:13:43] Find the people that know what your life is like.

[00:13:47] Find the people who get it. Find your lifelines in that sense.

[00:13:50] But then look at all of those because there's a bunch of them, especially if you've been online or listening to this podcast

[00:13:55] or have attended a conference, you have maybe a little set of rare disease friends.

[00:14:00] Now find the ones who you would be friends with without rare disease.

[00:14:04] I think those are some of the richest types of friends because you don't even have to talk about rare disease unless it comes up if you don't want to, right?

[00:14:11] And you can use random medical jargon real quick in a conversation and you won't have to explain it.

[00:14:17] But then you also don't have to put a pin in it.

[00:14:19] It's so refreshing to be able to just be around those people but then also be laughing so hard that your stomach hurts.

[00:14:25] So that's what I recommend. Find your friend who gets it, who you would be friends with no matter what

[00:14:30] with who you would have been friends with before having rare disease in your life.

[00:14:35] So find them on here. Find them by searching.

[00:14:38] If you want me to introduce you to some people, I'm happy to go to a conference.

[00:14:44] Make some posts, introduce yourself online.

[00:14:46] Go on a once upon a gene therapy walk and make a post in your local Facebook group and ask people to come out in person.

[00:14:52] I mean getting to meet people in real life is really, really special.

[00:14:56] And I just, I think we should concentrate a lot more on this aspect of our identity and of our self care.

[00:15:03] So yeah, that's my spiel today about friends from before and friends now who you would be friends with no matter what.

[00:15:09] So lots of love to all of you.

[00:15:12] I hope to see you at the Global Genes Rare Summit in September in Kansas City.

[00:15:17] If you're on the fence about it, go back and listen to one of my episodes that I'll link in the show notes where I tell you why you should come.

[00:15:23] It's so fun. It's such a great sort of reunion and you learn so much and you might take something away that will change your life.

[00:15:30] If you haven't registered, you can get 15% off by using the code friend of Effie. It's all one word.

[00:15:37] And yeah, I can't wait to see all of you there and I hope this episode has made you think a little bit and I hope I didn't just remind you how completely lonely and unfriended you are because you're not.

[00:15:48] You at least have me.

[00:15:49] I hope you've been enjoying this podcast.

[00:15:52] If you like what you hear, please share this show with your people and please make sure to rate and review it on iTunes or wherever you get your podcasts.

[00:16:00] You can also head over to Instagram, Facebook and Twitter to connect with me and stay updated on the show.

[00:16:06] If you're interested in sharing your story or if you have anything you would like to contribute, please submit it to my website at effieparks.com.

[00:16:15] Thank you so much for listening to the show and for supporting me along the way. I appreciate y'all so much.

[00:16:21] I don't know what kind of day you're having but if you need a little pick me up, Ford's got you.