Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew are joined today by Adam Johnson. Adam is a dad with a rare disease who shares his experiences to help raise awareness of life with a rare disease.
In today’s episode, Adam shares openly how his journey was from starting to feel the first symptoms to actually being diagnosed. Adam realized that knowing what was going on with his health was only the first step of a long journey. Adam shares the challenges of being a parent with a rare disease and the efforts he is making to create more consciousness in regards to the lives of families that witness and experience the progress of a rare disease on one of their members.
Kristy: Hello everyone, welcome to another episode of The Simply Unbreakable podcast, I’m your host Kristy Dickinson and I’m here with my co-host Brenda Agnew. Today we are very excited to have Adam Johnson join us. I first met Adam via Twitter chats that he and I participate in.
And Adam is a dad with a rare disease who shares his experiences to help raise awareness of life with rare disease. Obviously, a cause that is very near and dear to my heart. Adam, we are so happy that you can join us today, would you be open to telling us a bit about yourself?
Adam: Yeah, absolutely, thanks Kristy, thanks Brenda it’s good to be here with you, and I have to start by saying that I think The Simply Unbreakable has got to be on the all-name podcast team. Right, like that’s fantastic, I love it. So, yeah, thanks for having me on. It’s a pleasure to be here. Yeah, you summed it up Kristy well there.
I never would have necessarily guess that I’d be in this space right, in this rare disease world, but here I am. I use to be in the field of education I’m a teacher at heart, that’s what I went to school for my undergraduate and then my graduate degrees were in education. Taught elementary school and then did some coaching for elementary junior high high school.
Moved into a role where I got to teach some grad school so, teaching teachers which was a lot of fun, and then moved full-time to teaching undergraduates after that before I moved over to the curriculum side and more of the private sector and travelled and supported classroom teachers and students through the country with their curriculum.
And did some professional development and so, that’s a little bit about my professional background and where I came from. A long the way you know, I got married and we’ve got two wonderful kids. They’re in kindergarten and sixth grade now so, they just started and they’re a couple of weeks into school.
So, that tugs at the heartstrings a little bit too especially starting kinder and then last year of elementary school here where we are. And yeah, and then you know, rudely rare disease introduced itself to my life in the midst of all that and here I am just under two years post-diagnosis now at this point.
Brenda: So new, pretty new.
Adam: Pretty new still, yeah, yeah.
Kristy: Especially in the realm of rare, right. Like that’s –
Adam: Absolutely, yes.
Kristy: You know, I think other diagnosis two years in OK, but something rare I mean, you’re just finding your ground, right, so.
Adam: Yeah, that’s for sure and the way it all came about was I mean, nobody necessarily comes in and it’s like oh, yeah, it was just this quick simple thing, right that’s just not how it goes. But for me the – it was an arduous journey it was really challenging and difficult. I started noticing some symptoms pop up when I was travelling around and doing you know, PD across the country.
And I was doing some different workout routines that I’d picked up on. And was really feeling pretty good for a bit there, and then all of a sudden I couldn’t sustain things anymore and I noticed that my strength was waning. I couldn’t you know, couldn’t do what I was able to do before in a fairly easy way at that point.
And you know, any fatigue or you know, “symptoms” that I would have was just like hey, I had a good workout, right, like I’m feeling pretty good. You know, feel the burn and that used to be a thing. That’s a good thing.
And now like uh-oh, you know, so, those things started to fire up and I was at the time I was 35 and I was like I don’t have time for this stuff, I’m just going to ignore it and keep pushing through, right. And I did that until I really couldn’t anymore. And that’s when the real search for a diagnosis began.
Kristy: We don’t know anything about just pushing through until you can’t anymore, do we Brenda?
Brenda: No, or the search for a diagnosis.
Kristy: Yeah, that’s my MO, that’s still my MO and those closest to me know I go like right to the tenth degree. Like it’ll either get better or it’ll kill me so, we’re going to just we’re going to go with – we’re going to see how this plays out.
But for you, how long – like what was your journey to diagnosis from you know, I started noticing that things weren’t as they should be or my normal to getting to that diagnosis? What was that like and how long did that take?
Adam: Well, it took just under a year to get to that point which you know, as you both know that’s not really a long time in the world of rare disease.
Adam: It’s pretty quick, all things considered. I didn’t know how quick until I found a support group that was with my specific disease and I was like you weren’t believe how long it’s taken me to get this to this point. And they’re like yeah, no, that’s not that long. And I’m like oh my goodness, like really. But it was incredibly difficult it was so challenging. So, when I first started to see the symptoms popped up like I said, I pushed through, kept working, kept travelling, kept doing the dad thing, husband thing and you know, tried my best to hide it.
And I’ve never been one to talk about myself and how I’m doing or what I’m struggling with anyways so, when stuff comes up it’s just you know, bottle it up shove it aside, pretend like everything’s fine. And I did that until I was coming home I was in an airport ready to fly home from a work trip.
I was talking to a colleague and it was like oh, my something isn’t right here, I’ve got to go sit down. It was just this incredible stressful like heart beating fatigue like I have to sit down right now and I did that and had to kind of gather myself a little bit, rest a little bit, and by the time I was feeling up to making my way to the gate, I’d missed my flight home. I had to take a later flight.
That night when I got home I had my first fall and that’s when it was kind of like all right, we’d better probably you know, check into this might be a good idea to do that. So, that’s when the symptoms really ramped up to a point where I couldn’t ignore them anymore or I chose not to ignore them anymore and I started you know, seeking help from my primary care doctor.
Which turned into you know, all these different tests and these referrals and I started seeing all sorts of different people while I was still travelling and working. That took a toll for a couple of the months and then I had to step away from work for what I thought would be a short period of time while I figured all this out.
Right, I’m going to go on short-term disability and get this stuff squared away and then I’m going to come back and I’m going to be better than ever. And that didn’t happen either. And that was quite a shock to me as well. So, it was a few months more after that until I finally came to a diagnosis.
You know, many specialists many trips out of state, couple of different universities some you know, highly prestigious doctors in the region here, and a lot of blank stares, a lot of I’m not sure. A lot of we don’t know what’s going on and two very specific instances of folks saying, well, it’s all in your head. You know, figure it out, get over it, move on. And that is brutal.
Brenda: How is that still a thing, yeah, I don’t even know.
Adam: I hear you Brenda. I wonder that and I see that sometimes now still happening you know, and this was for me this was just you know, a little over a year ago that this was still happening. So, then in October and then in October I finally got a diagnosis. October of 2019 I came in, got some results from a muscle biopsy. I came into the appointment thinking great, treatment, cure, figure out what’s going on, back to it and it was the complete opposite.
It was this is a progressive disease, a mitochondrial disease, mitochondrial myopathy, I’d never heard those words before. I didn’t know anything about it, you know, and that’s when my world was really turned upside down.
Kristy: Yeah, absolutely. I can’t even you know, I mean, every time I hear these stories of people who have been you know, received this diagnosis especially after so long of searching, and you’re right, I mean, I think there’s an assumption that once you receive the diagnosis it's like OK, I’ve got the diagnosis, we’ve figured it out.
Now, OK, there’s got to be a plan because I have the diagnosis in my hand now. And then to get to that point where it’s like yes, we have a diagnosis for you; however, there’s still all of these roadblocks or all of these unknowns. And then all of the comorbidities that exist, all the other spin off things that happen typically from some of these rare diseases.
And then that’s a whole other piece to manage so, it’s not like you’re just getting diagnosis oh, here’s your primary issue, you know, x, y, z. It's going to cause this, this and this. And then we don’t know how to treat this this and this and I mean, that I think is the saddest most difficult part for me to hear.
You know, people like yourselves when you’re going through this journey because it’s just not a finite point that you get to when you receive this diagnosis. It’s almost like that’s where you’re going to start now. You know, I don’t know.
Brenda: I feel like though so, Adam your story resonates obviously with me on multiple points. And I think someone should tell people at the beginning of like as you’re beginning to explore things, don’t get your hopes up for when you get the diagnosis, because that’s when the real work starts.
Because I think the overall impression for everyone is if I get you know, if I’m experiencing symptoms, I might be ill they’ll figure out what it is and then I’ll be OK. Or I’ll have a plan and be OK like I say that kind of loosely because the definition of OK like for you and I has changed you know, Brenda’s definition of OK that changes on a daily basis.
But no one ever talks about you know, this journey is not a linear journey and when you get your diagnosis that is really the start of the work. And like you know, it’s never going to be fluid so, especially in the rare world where you’re often teaching your health care providers about your condition. Depending on just how rare you are. You talked a bit about early on joining like a disease – your condition specific support group, what was that experience like for you?
Adam: I was scared.
Kristy: What you were going to hear.
Adam: Plain scared, yeah, what – you know, because I heard those words, right mitochondrial myopathy, mitochondrial disease and I’m like what use is that to me except for like a killer word in Scrabble, right. Like I mean – That’s a 30-point word.
Adam: Yeah, exactly. I mean, throw that thing on the star and like you got a double word score. I mean, I don’t, you know, I don’t know what that means and for me to hear just and it was so, I’m thankful for the doctor right, very appreciative. Nobody else was able to figure out what was going on. The way that it was communicated to me was very matter of fact, here’s a little handout you’re not going to be going back to work.
We’re going to get you on disability, you know, start the paperwork. There’s no treatment, there’s no cure, you’re life now is about managing. And there wasn’t much empathy there. And it – so, that in and of itself was just you know, scary and I’m trying to figure out wait what was that word again and you know, and then I you know, had the longest drive ever home.
Just trying to process and just crying like trying to figure out what just happened. What just happened and so, it really threw me for a loop a big loop. And you know, so, then I’m like OK, what else do I do so, this guy just said, basically good luck with all that, right. And at that point was one of the lowest points of my life quite frankly, right.
Like it was just incredibly challenging and difficult and I didn’t really know what to do. So, you start you know, you process a little bit the best that you can, and you have to have the conversations with your employer, with your family, with your friends a little bit. And again, I’m not one to talk a whole lot about myself, at least I wasn’t. Now, I’m an open book.
Ask me whatever you want. But before it was like oh, boy what do I do and so, I started in on the Google machine, right. Like what can you find, and then I found, I finally found MitoAction they – I saw that they had a support group on Fridays.
And you know, so, I called in one day, I finally got up the guts it wasn’t right away. It was you know, after a few weeks, I finally got up the nerve to call in and when I did there was a voice on the other line and I had to speak. You know, and –
Kristy: Right, what do I say now.
Adam: Yeah, right, well, I’m here now what. And I started talking to them and it was you know, kind of nice to be able to get some of those things off my chest and realize OK, I’m not the only one with this disease that’s out there, there are other folks that are in a similar situation.
Mitochondrial disease is really unique in that I might have the same deficiencies that somebody else does or the same you know, issues in a certain complex in the chain. But it might present very differently yet even so, I was still really thankful that to find them.
And then I’ve basically been calling into that group every week for the last year and a half or so after I figured out that it was there as a resource. And I’ve made some great friends and some partnerships with them to kind of move some things forward for some projects that I’ve been excited to be a part of as well.
Kristy: Isn’t it astounding to find people like this on my –what you’re talking about and on my own personal journey I didn’t realize just how important finding just one person who understands.
Because I feel like you know, you had you’ve got your professional life, you’ve got a family, you’ve got friends, so, obviously you’ve got a support group of people that love you and care about you that want to help you.
But I – like at least for me personally I feel like a) I don’t want to be a burden and b) there’s no way that they can actually understand that someone just pulled the rug out from under me. And to know that I can’t go back to the job I was doing before, there’s no cure, we don’t know about treatments.
Like that is such a – those things all in and of itself like just singularly would be massive for anyone to have to deal with. And then you put them all together and you’re like geez, no one understands what I’m going through so, they can have compassion for me and they can empathise with me. But I found for me and my EDS community that I ultimately ended up finding it was a different level of support.
Or a different just I guess I was able to share and I am able to share and express myself differently to fellow patients then I am say to my husband or my best friend or my dad. I don’t know if that’s the same for you, but I find those communities just when you find the right one so, incredibly impactful.
Adam: Yeah, I couldn’t agree more Kristy, it’s – that was a big turning point for me because you know, like you mentioned there’s many different kind of hats that we wear right, or buckets that we pull from and all of sudden, all of those different things are just turned upside down.
And we’re trying to figure out which direction’s up and it really does feel like you are the only person that’s going through that at that point and time. I knew that’s not true. You know there are other people out there, but how do you even find them? Where do you even go, what do you do? And so, me being able to find the folks through MitoAction was fantastic.
There was one particular community that I hadn’t been able to find and that was other parents who have a rare disease themselves. And I’ve – I’m grappling with that and processing that quite a bit and I’ve got a knew project where I’m going to actually do some podcast work and host an episode about once a month to talk to another parent.
You know, or other parents that have a rare disease or a chronic illness and start to kind of build that community a little bit. I love the rare disease community at large. It’s fabulous. I’m so thankful that I found it, I’m so appreciative of some of those relationships that have been developed because of that.
And like you said Kristy, it was really important for me because I can explain things or try to explain things to friends, family you know, former colleagues whatever, whatever the case might be, but it’s just different. You don’t connect on the same level and when I was finally dabbling with you know, social media and figuring out where things were going.
And who I could connect with, that was one part that I didn’t see a whole lot about. And I was encouraged by some wonderful folks that have been supportive of me along the way that sometimes when you don’t have that community right Kristy, that you spoke of sometimes you have to make it.
Kristy: 100%. Absolutely.
Adam: And so, that’s what I’m hoping to do here soon, yeah.
Kristy: OK, well, I want to know more about that as that evolves because it’s something that I’ve talked about not a tonne, I think it’s – I’ve got three kids, my children are 14, 11, and 8. So, you talked about your kindie and your grade 6 and Brenda and I – so, my oldest and her youngest are starting high school next week so, we’re on that evolution as well.
And it wasn’t like when I think about my journey and grieving the change of job and that like so much of what defines you comes from your professional life. And then your family life and I did take like you I closed down like I had to stop my business and figure out my health.
I didn’t spend as much time at the front of my diagnosis rectifying what impact this was going to have on my family and my kids. And so, I love the fact that you’re working through this you know, earlier I think if you got your diagnosis in 2019 and here we are in 2021, you’re doing it you know, earlier in your journey.
Whereas that really just hit me probably in the past two years and I’m like eight to nine years into my diagnosis. So, good for you for you know, for navigating that now.
And you know, please include me on anything that you find because I think you know, being a parent that lives with a rare condition just adds a level of complexity to parenting that there’s no books on. Like how are you navigating that or what does that look like for you?
Adam: Well, it’s one of the most challenging things if not, if not perhaps the most challenging thing for me to figure out how do you balance those aspects out right, and there’s so many layers that go along with that. I mean, you mentioned all the layers that we have to kind of deal with outside of that and then when you take one of those layers and there’s layers for the layers, right.
Adam: It’s like the old expression you know, peel back an onion well, then you’ve got like a brand-new onion in there you know.
Kristy: And I imagine conversations that you would have with your oldest would be really different than you would have with your youngest, right, because we have to – I know that that’s the case in my house anyway.
Like I have much different levels of transparency I guess. I’m very honest with my kids about my condition, and what we can expect. And when things aren’t good I don’t hide that, I know that that’s – everyone does what’s right for their family. How do you or how have you worked through that in your personal life I guess?
Adam: Yeah, well, the initial conversations for me were some of the most difficult because they knew, right, kids are just so perceptive and I’ve learned this from my time in the classrooms to my time being a dad now for the last 11 almost 12 years. And those initial conversations were incredibly challenging.
I think to a certain point being a former teacher I used to teach second grade and fourth grade when I was in elementary and putting you know, terminologies and topics and things into kid friendly language was something that I used to do for a living. And in this instance I feel like that might have been helpful for me so, I tried to put things in the best kid friendly language that I could.
You know, hey, I know that you guys have seen that I’ve been you know, struggling with things, I haven’t been feeling well, I’ve been really tired. And we finally kind of figured out why and it’s because I have a disease called mitochondrial disease and mitochondrial you know, we talk about that a real basic level.
That’s what helps your body – it helps you have energy. You know, I’m going back in my mind to like you know, junior high and high school science class, mitochondria powerhouse of the cell that’s right. And having some high-level conversations with the kiddos just so they kind of get a sense of what’s going on.
And so, my older one who’s 11, Emma, she is just the sweetest, she doesn’t want any pain, discomfort, she doesn’t want any tribulation for anybody, right. Like she just wants some status quo where people are healthy, where people are happy and good. And I just feel so much for her because that has to be and I know it is, based on you know, subsequent conversations, it’s incredibly challenging for her.
So, when I first told her about that she took it in and I didn’t push it beyond that, it was just again, real basic high-level. I knew she was ready to take some of the next steps in our conversations forward when she came home from work – oh, sorry, excuse me – came home from school one day pre-pandemic, right, when she was still in the classroom.
And she came back and she said hey, we’re doing this project in class about the human body and each student’s supposed to teach the class about part of our body. And she said, mitochondria wasn’t on the list, but I asked my teacher if I could do that. And it was just one of those like I kind of describe it as equal parts heartbreaking because we’re in that situation, right, where she has these thoughts going through her head.
And also, just this kind of proud moment as well as a dad where I’m like all right, she’s ready to dig into this a little bit, and she’s telling me right now and part of the reason she wanted to do that because she wanted to teach her class what was going on with me. And it was just it was like it was just pulled at the heartstrings a lot.
And but then we found some resources you know, again, kid friendly resources, she dug in a little bit, found out what that was and you know, if we fast forward to now she’s a few months into a project that she’s done with MitoAction called Another Helping. She founded this movement where she is supporting others in the mitochondrial disease community through her love for baking and helping people.
So, she bakes cupcakes you can go onto her website and order cupcakes or have them ordered for somebody else and she gets that money goes back toward MitoAction. It helps people and families in a similar situation so, she demonstrates to me such great empathy because she recognized all the different things that I’m going through and knows that other people are experiencing that as well.
And so, in between all of that though back to your original point I guess Kristy, there’s a lot of different conversations that are different for her compared to my son. With my son you know, he’s five now and there’s times when he I mean, he gets it too.
He gets it too, he’s sitting there with me and we’re playing or something and I’m just you can see the bags under my eyes right now like I’m just continually tired and my energy gets zapped really quickly. So, we’re sitting these playing cars and it was just a really tough time for me and I’m kind of like you know, eyes closed, zooming the thing around a little bit.
And he came up put his hand on my arm he’s like, dad, do you need some rest time? And you’re just like oh, buddy. Yeah, let’s finish this game for a couple of minutes and then yes, I absolutely do need that. So, it’s interesting, yeah.
Kristy: They can be so intuitive sometimes.
Adam: Well, they really can, yeah. They can, they’re so intuitive and actually, just the other day I just sent a tweet out about the – my college kids always used to give me so much guff over this though when I’d say sent a tweet out. They’re like you just tweet.
Brenda: Right, there’s no sending.
Adam: You don’t send a tweet, you tweet. And I would say the Twitter just to kind of rub them, I’m on the Twitter. I just sent out the tweet today, but it was about a conversation I just had with my son. So, this past weekend we got to go down to – I live just outside of Boise, I used to teach at Boise State University and I went to school there.
And we went down and we got to go on the blue turf on the field and he was just like oh, my gosh this is the coolest thing ever. He’s running all over the field and scoring touchdowns and he’s just having a blast.
Well, we left and you know, I think it was maybe the next day and I was like man, buddy you were so fast on that football field, you were just running all over the place. And he said, yeah, I was fast, you weren’t.
Kristy: Don’t you love it when they keep you honest.
Adam: Yeah, I was like no, yeah, you’re right, yeah, I mean, I’m riding my little mobility scooter and I rode that down next to the field and I’ve got my leg brace on walking out there with my cane. And I’m just like videoing him and soaking it up and he goes, yeah, no, you weren’t because of your disease.
And I was like yeah, you’re right buddy because of my disease, and he said, I don’t have diseases. And I said, no you don’t, and I’m so thankful for that and he said, yeah, me too.
Brenda: Yeah, they’re pretty extraordinary and as you’re talking the parenting piece so, my son has cerebral palsy so, it’s different for me because I’m in the flipside, but one of the areas as you were speaking that was resonating was for a long time no one was looking in our community at the impact on siblings.
And so, you know, now we’re seeing more and more sib projects come up and we’re seeing more and more, but nobody understood what that impact looked like for the siblings of those kids who you know, do have either a chronic condition or disorder or a disability. And again, the impact that it has on them and it’s an extraordinary impact, the bond between them is quite different I think than a typical sibling relationship.
And there’s always this thought process that when the parents were no longer around you know, the care is going to fall to the siblings. And so, what are we doing to recognize the struggles that they’re having. And I was thinking about that you know, with my – I mean, my kids are only 20 months apart and as I was dragging my youngest son to every appointment under the sun for two years, guess who came along with him.
Because he wasn’t old enough to go to school and you know, I’m expecting him to sit there and be quiet and let me do my thing and you know, I think about the emotional impact at that time receiving the diagnosis. You know, and I wasn’t able to be present and you know, and then sort of throughout you know, there’s the conversations about we can here, but we can’t go here, or we’re not able to do this because of this.
Or you know, it has a huge impact on the family, and I think sometimes they are – these kids are so resilient and they are so intuitive that we just sort of assume that you know, this is the only way they know it to be and so, this is the way they’re going to adapt. But there’s a lot more going on underneath that.
You know, and we’ve really had to sort of step back and try to decide sometimes is this – are we asking him to be a typical sibling or are we asking him to be something different? And I know it’s different for every family.
But you know, studies are now showing that this is an important population that needs to be supported and needs to have resources and needs to have a different approach taken. You know, because you know, they’re all involved just similar to the parenting piece, right.
Adam: Yeah, absolutely. And it’s such I mean, for me and just listening to you describe those dynamics Brenda, there are a lot of parallels there. And there are also so many more questions that I have as well because it’s deep, there’s a lot there’s so many layers that are in there.
And a lot of those same you know, things that you mentioned are some of the concerns that I have moving forward because you’ve got the – you’ve got kind of the short-term here and now type situations and then you’ve got you know, when you step back and take a look at like the more macro-level, there’s some long-term impacts that are really challenging to consider let alone experience.
Adam: And yeah.
Kristy: It’s – you talked in the beginning about how the doctor matter of factly gave you your diagnosis and I so, something that I’ve been really you know, noodling in my head over the past well, for a while now, but really, really over the past year, year and half is the overlooked link between your physical health and your mental health when it comes to any type of diagnosis.
Like we have a physical condition, why aren’t our health care providers at that moment also introducing the mental health supports that are needed to navigate that. Like that typically falls on advocacy groups or non-profits or charities. They are so intrinsically linked and then you take that the one step further to your family, like I am a huge supporter of therapy and always have been.
And so, all three of our kids you know, they process my condition differently, they’re three really different kids. But all three at different times have spoken privately with their child psychiatrist to help them navigate those big feelings. And we’re at the point now where one of them will come to me and say, I think I need to talk to Dr. Christina.
I’m like, OK, and that’s like you know, maybe they haven’t talked to her for a year or year and half or two years. But whatever changes in our family or whatever they’re going through in their little worlds to be able to at the age of like 11 or 8 put your hand up and say, I think I need to talk to someone, we should be raising everybody like that.
Like imagine how much you know, how much better and easier it would be if our care so, your neurologist is working with your psychiatrist. Your cardiologist is working with your psychiatrist like I don’t know, to me it’s just such a big gap.
Adam: Yes, huge gap. And I’m really glad that you’re supporting your children in that way Kristy, that’s it’s incredible and you know, kudos to you and your family for how you’re navigating that. For me, you know, on the personal side and I wrote about this a little bit in one of my blog posts probably you know, just over a year ago or so.
Where I talked about you know, rare disease and my mental health and I titled it “I Wasn’t OK and That’s OK.” And you know, some of the resources that I’ve stumbled across since then have been really helpful for that like Megan Divine’s work and David Kesler’s work on grief. And Brene Brown’s like you know, I just love her to death and benefit so much from the work that she does.
The whole process though for me as I was going through because there was that period between symptom and diagnosis where especially after I had a doctor look at me and say this is all mental where I’m just you know. And then you start going OK, are they right? I think they’re right.
Kristy: They’re gaslighting me here.
Adam: Yeah, I – well, I didn’t even know that term initially especially in the medical field. You know, they’re the doctor and I was also like you hear the doctor tells you what’s going on and then you kind of do it, doctor tells you to do.
And I was like holy, crap this is just ridiculous I just don’t understand that. I was really mad, really frustrated, I went back to my primary care doctor who’s seen me for years really, really appreciate the work that he does and the help that he provides to me.
He came in one day and he said look, I don’t think – he said I know that you’re symptoms are real. I do not think that what your experiencing is a result of any mental health concerns. With that said, I have seen you from the onset of these symptoms when you started coming into me and I can see that as a result of what you are going through right now, I call it the diagnostic odyssey right.
Like as a result of what I was going through he could see that it was impacting my mental health and it’s hard to hear. But I’m glad that he said that and I took the recommendation of the person he told me to call, get in touch with, the referral and I took the prescription that he gave to me. And I didn’t do anything with either one of those for quite a while, right.
Just sat there for a while and I finally filled the prescription, I had stare downs with the bottle, it was sitting on the counter across from me. Right, like I’m like – there were a few times where I would pick up the phone and think about calling to make an appointment to go talk to somebody and then I would put the phone down.
I literally got to the point where I would dial the number in and hover my finger over the green dot to hit call and I wouldn’t do it. I called the first time and it went to voicemail and I’m like oh, I tried, you know. But it was such a struggle for me, right, like all along and I wrote about it, I wrote about it where it was like every step was just this challenge for me to try to overcome.
And eventually I made it in and I still do that, I have a you know, an appointment once a week to talk about my mental health and to get that support. And in addition to the other things that I have, the other supports that I have, it’s really helpful. Doesn’t fix everything, there’s still struggles, but I’m really glad that I have those things now. And I appreciate how you’re sharing about that and talking about in light of your kids too Kristy.
Kristy: Well, I think it’s you know, it’s a tool in our toolbox, and it took me so, I’m much like you I struggled with feeling internal shame and I had some not shame is probably the wrong word, but like you think that like I can work through this, I’m strong, I can figure it out it’s not impacting me, blah blah blah.
And then I you know, it’s funny because I had not funny ha ha, but funny that I had some post-partum depression after I had my first child. And I was anxious before that and now you know I’ve got the luxury of looking at I’m 45 so, I’m you know, at a 40,000-foot view and I can look back and look at my childhood and see what I navigated and like yeah, OK.
I can see where the anxiety developed like my mom got a terminal cancer diagnosis when I was 10. So, you know, clearly that is an impacting like a very life changing situation for a child. Hence the anxiety, no one surprised but me, right. So, I went to my doctor when after I’d had my first born and she said, you know, I think you’ve got some depression. And I’m like no, I’m fine.
So, I went to the therapist that she recommended and he said, you’re going to need medication like you don’t know me very well, but I can – let’s work on the cognitive behaviour therapy and I can muscle through this you know, give me some tools and I’ll go and do it. And about two months later I walked into his office and I’m like I need all the medication, it’s not working, nothing’s working.
And it was you know, that was kind of probably the start of my acknowledging that it’s OK to not be OK. And for me it comes in ebbs and flows. And I never wanted my kids to suffer to get to the point where you’re crawling for help. I never wanted that so, I was lucky that my dad’s set a really good example when my mom got sick and when she eventually passed like we were in therapy right away.
And we were in therapy as a family and we went individually and so, I had that, that was modelled and I think that really it – that gave me a good opportunity to again, just get a different tool for my kids to put in their toolbox.
Brenda: Well, and you know that I mean, as you are speaking Kristy, you know, it’s – I’m just coming back to all of those times where I, I think that there has been missed opportunities to introduce that mental health support piece. You know, we’re missing at the point of diagnosis, we’re missing it as certain points along the way I mean, you know, similar to you I had post-partum after Chase and it was easily diagnosed and it was no problem.
But I remember when we had Maclean and he was in the NICU and I called my primary care physician for something unrelated and I called a couple of weeks after he was born and she asked me she said, do you need something for sleeping, like you’re going to – this is going to hit you. Like do you need … and I was like and she identified right away.
Like she was like OK, tell me about Maclean, how is that going and then she’s like but we’re going to need to talk about you and she brought that forward and thank God she did because I really needed it then. But you know, I think about these parents, these patients, these people who receive these life changing diagnosis.
I always call you know, it’s the before and after, right. It was your life before you got that diagnosis and then it’s your life after. There was a definitive split between those two worlds. And we get this life changing diagnosis that is going to impact so many different areas of your family, your profession whatever that might be, your future and then like you said it’s a piece of paper.
I mean, different doctors will do things differently and I’ve seen that in a diagnosis delivery situation, but routinely it is I’m so sorry to tell you, this is the situation here’s a handout and then that’s it and then the referrals might come for cardiology or GI or you know, whatever that might be.
But we don’t see that automatic referral or that automatic discussion around mental health and I’m telling you whether you’re a parent who’s had a child diagnosed, whether you’re a person who has been diagnosed you are going to need at some point in your journey you’re going to need a mental health support or someone in your family’s going to need it.
And so, you know, that to me should just be an automatic here’s your diagnosis, I’m so sorry, here’s some information and with that you know, let’s talk about how we can support you from a mental health perspective while you’re going through all of this.
And we know the wait times are long, we know the resources are scarce, and you know, I wonder sometimes how much that support initially would change the trajectory of how people navigate their diagnosis, navigate their condition and actually just deal with that condition.
You know, and what impact it might make on the on their health and wellness or just you in general because we know that when you have a handle on your mental health everything else can feel just a little bit better. And I just feel like we missed that boat so much and it’s really disappointing to me.
Adam: And I also, I wonder oh, sorry Kristy, I was just going to say I also feel like there perhaps that could be a part of the you know, a large issue that comes up as well and that’s taking away the stigma. Because there’s just such a stigma that’s attached to it you know, and I tried to write a little bit about my experience with that as well. And that’s honestly it was one of the hardest things that I’ve done to put myself out there.
And I went in stages in terms of how I’ve tried to own my story a little bit more. And I’ve got a website now rarediseasedad.com where I post some blogs and highlight some of the you know, some of the podcast appearances or things like that. And one of the most challenging things for me was that first post where I said, hey here’s how I am and here’s what I’m going through and the next one was about my mental health.
And it was daunting for me. I mean, you see folks that are getting more pushback and I’m excited to see that it’s sad that it’s taken this long. And this amount of people that have gone through this and that were still now in September of 2021 there’s still that stigma attached to it.
But it is exciting in a sense that it’s starting to become a little more mainstream where people are opening up and discussing things. Especially folks that are in more high-profile visible you know, situations. And that was what ultimately kind of drove me to it was hey, what if there’s somebody else out there that’s really close to me?
Somebody that knows me and I don’t know the struggles that they’re going through because everybody has their stuff, right. What if I’m able to share a little bit about my experience to try to chip away at it and make it a little more normal to talk about some of those things. And for people to recognize that it’s OK to do that.
Kristy: I think it’s – so, Brenda and I did a podcast in January or February where we talked about our mental health journeys and what those have looked like and you know, for me that was you know, like you it is – I’m always nervous about how much – I am an open book as well.
And a little piece of me always worries about am I sharing too much. Like is this too much, but what I found over the last while is there’s so many people even unexpected people that will hold space for me.
It’s very hard for me to ask for help still to this day like I struggle with that. So, what Brenda talked about earlier and where I do see opportunities is rather than waiting so much burden especially in a rare disease world falls on the patient to advocate –
Brenda: Way too much.
Kristy: – To navigate, to fight, to prove it’s not in your head that finally saying OK, I need some support I need some help, I’m sad, I’m tired, I’m overwhelmed I’m vulnerable. That is so hard, I mean that’s hard on a regular day. Let alone when you are physically drained, right. So, what about why can’t we just take the burden off the patient or the caregiver and just say here, we’re here to help you.
Here’s this support, here’s access to this resource, here’s a list of people that you could talk to. And then to your point when you’re ready like I came into our podcast today coming off of an appointment with a new health care provider for myself and she said, when you’re ready call to book your next appointment.
And I was like oh, I’m sorry, pardon? She’s like think about what we’ve talked about and when you’re ready I’ll see you. It’s like wow, is it – you’re humanizing health care.
Brenda: See, and I look at the other way where I’m like don’t leave that to me because I’m going to forget and I’m not going to – so, I’m the opposite where I’m like book me an appointment and if I don’t need it I will cancel it. But if you leave it to me it’s – I’m so overwhelmed it’s not going to happen.
So, I think it’s a – I think it’s almost like a hybrid, I love to hear – and there is a doctor who I know not similar to this, but he gives diagnosis and he’s a wonderful doctor out of Kennedy Krieger. And he has to give very difficult diagnosis to families and he automatically will book when he gives you the one appointment he’s automatically booked you a second appointment whether you need it or not.
And you can cancel it if you want, but he’s like I’m going to give them this devastating news, it’s going to change their life forever as parents and as a family so, they’re not going to be able to take it all in. They’re not going to be able to process it so, I’m going to have another appointment set up for them.
So, that when you know, two weeks or three weeks have gone by or a month or whatever that is they can come back and now they’ve had time to digest, they have a list of questions. There’s nothing worse than here’s your diagnosis, do you have any questions? So, he kind of works it in where he’s like it’s an automatic and families can call and say I don’t need it or whatever it is.
But it’s built in as part of that you know that human health care that so, it’s interesting again, this is Kristy and I see things so, differently sometimes as patients and as a parent to someone who’s got it. But you’re right I think I don’t want to miss your point, which is they’re listening.
You know, and that is such an important part because too much falls to the person. I can’t even – I know how exhausted I am day in and day out navigating from a claim, I know that this work has been extraordinary difficult because we’re starting school. And I also have mental health struggles.
I cannot imagine what it’s like to have to navigate your own health care system – your own health care journey when you are sick, when you’re tired, when you’re sore, when you’re you know, not feeling well. I can’t even and I’ve been there with Kristy when she’s been in that situation and it’s hard enough for me to advocate as someone who’s not living with that.
I can’t imagine how you guys advocate and navigate that when you’re the ones who are living with that. I mean, I just can’t, and you know, it’s got to be so difficult so, I hope that any health care professionals that are listening to this, they make it a little bit easier because it’s hard. That’s my rant, sorry.
Adam: No, it certainly is Brenda, I’m right there with you it’s incredibly challenging, it’s daunting at times as well. And trying to figure out how to balance all of those different needs and keep track of the appointments and figure out – I’m about ready to start on this next round because with this mitochondrial disease that I have I’ve got to go in.
And get you know, regular check-ups on a yearly basis at minimum to check the different organ systems to see how they’re being impacted at the time. And I’ve had you know, a secondary diagnosis called extrinsic restrictive disease that makes it hard on my breathing. I’ve got a ventilator at home that does some breathing for me at night.
Thankfully, it’s on the you know, it’s not the setting that what is the wording that they use for that? Oh, the intrinsic setting, it’s still something that I can use just kind of like almost the CPAP type situation right, where I just put it on there, but it breathes for me and it’s not invasive.
At this point I’m thankful for it, yet that’s also another thing that is difficult to manage. It’s hard to keep track of those appointments, it’s hard to keep track of that information, it’s hard when that doctor doesn’t necessarily talk to the other doctor.
Or I’ve got to go back into see my neurologist and see my cardiologist and to go you know, back up to the university in another state to follow-up and check in with them. Meanwhile, you know, as you go through these situations you know, as we all learn there is so many different challenges that come up along the way that are just ridiculous and shouldn’t be the way that it is.
It shouldn’t be so difficult to get approval for a test. It shouldn’t be so difficult to get a mobility device that will help me get around outside of the home. You know, it shouldn’t be so challenging to set that next appointment, to figure out the co-pays, to get through the insurance claims, I mean, it is just a never-ending journey. And yeah, on top of everything else it can become overwhelming at times.
Kristy: I’ve often said being sick is a full-time job. And caring for someone who has a complex or a chronic illness is a full-time job.
Brenda: Yeah, yeah.
Kristy: And you’re right Adam, it just it really shouldn’t be this hard.
Brenda: No, and you know, and you continue to hear it. Like that’s the part that boggles my mind, it’s not like we’re talking about something about something 10 years ago. Kristy’s diagnosis was eight, nine years ago, yours was two years ago. You know, Maclean’s was probably 12 years ago, but nothing has changed.
As you’re talking I’m like you know, I’m still struggling to get what he needs from a mobility perspective. We’re still now getting the education system, I still have to send in funding forms that change constantly and have issues. I still have to do so many things that you know, waiting for phone calls back, asking for referrals, like all of those things and you know, like how is it not changing.
That’s – and I talked a lot about this where I really think there has to be a component that happens during the education piece during med school at the colleges and universities when people are going through for some of the specialities and some of these professions. It has to be rooted, it has to be engrained so, that it’s the top of mind in your thinking.
Whether it’s social workers, whether it’s system navigators whatever it is. It has to be – it’s always an afterthought in my opinion. And like man, like that’s just – it’s – it shouldn’t be that difficult. It really shouldn’t and yet it continues to be and why is that because there’s so many people that are talking out about it and podcasting about it and blogging about it.
And you know, we get asked to speak at these events about it and yet you get the applause and then you’re back on Monday to the same situation. And it’s just – I don’t understand and I don’t know what it will take to change it, but I’m running out of steam.
Kristy: Well –
Brenda: And I’m getting old.
Kristy: – So, what I will say is connections like the one that we’ve made today and like our Tuesday night chats that we’re a part of. I really fundamentally believe that change happens when a group of like-minded people get together for the right reasons and every baby step that we take you know, we’re making it better for our kids.
And it’s hard for us, but maybe it will be this much better when our kids have to navigate it and that makes Brenda like so, my – and today is you know, I’m not my usual positive self, I’m like really for my mental health I like to – I focus really, really, really hard on gratitude and I am intentionally – I try and operate from a place of finding the silver lining. It makes Brenda crazy, so, she you know, her and I are good yin and yang.
But I do believe that we all learn like to me there is no greater or more impactful way to make change than storytelling. And eventually there will be enough people like you know, going back to the mental health thing. There will be enough people that share their stories so, that you know, it will not be something that is rooted in shame.
It will be something that is openly talked about, we will be able to demonstrate the lengths between physical health and mental health. I believe that, I just do and I think you know, finding our places in our individual communities and coming together there is power in that. It’s just you know to Brenda’s point, it is tiring. Some days are easier than others.
Adam: Yeah, right, right. And there’s so many different things, that’s the one thing that I’m really struggling. The one thing that I’m struggling is there’s so many things. Right –
Kristy: It’s all the things.
Adam: It’s all the things, right, yeah. So, I mean, and I get you know, I get going and my mind gets racing and I’m like OK, I want to take care of this and we wanted to advocate for that and we want to take care of this part. All the while, this disease that I have there’s no cure.
Right, and so, we want to push the research forward we want to raise the funds that are going to support that and move that needle. And so, what I’m you now, I haven’t really started advocating until abou a year ago. I started on the Twitter about a year ago and I did it anonymously at the beginning and then I decided to put my – did I get you with the Twitter?
Brenda: Yes, I love it.
Adam: And so, you know, that was just about a year ago and started out anonymous. I was just kind of lurking around trying to figure out what was going on there and then I put my name on it and I started the blog, started the website, started finding hashtags and making connections and you know, I met Kristy in a couple of the chats there. And it’s been really wonderful and it’s been great.
When I see different things that pop up I think aww, I could talk with this person about changing this or getting some updates here or doing that there. Oh, there’s this advocacy you know, movement that’s happening here or this class there or this issues here, I want to try to move that forward.
And you know, coming back to that mental health side it got a bit overwhelming for me at times. And I have to remember that I’ve got to pace myself a little bit and I’ve had some wonderful friends that have helped me with that as well. You know, I’ll support you on your journey I’ll support the causes that are important to you, the things that you want to do.
But we’ve really got to prioritize for us because we can’t do all the things. And that was one thing that was really helpful for me at the beginning of this calendar year after I’d started to advocate for a few months a little bit more. I set aside some goals.
And said, hey, if I don’t have – if what I’m doing isn’t fitting into these you know, three or four major buckets that I have set up for my goals then you know, while I can support that I’m going to have to put a pin in it for now and use these as my main avenues to move things forward. And –
Kristy: Oh, that is so good. That is so good, and I’m going to take that. I hope you don’t mind, but I’m going to borrow that for myself because I am the worst at that. I have a girlfriend that talks to me about owning my calendar and being relentless in owning that calendar. And I am –
Adam: I love that.
Kristy: – like that is my biggest goal for myself, for my you know, my family life and my professional life and my patient advocacy because I’m like I’m a bleeding-heart right. And I want to help everybody, and you can’t. it’s like boiling the ocean so, if we can make – so, this is where I kind of think that community piece comes in because many hands make for light work, right.
So, I don’t have to solve the mental health crisis, I can share my experiences, I can share my stories and I can support it where I can. I don’t have to be the sole person to raise awareness for EDS and to advocate for research. I can like you know, what I mean.
So, much like you I think I’ve got my priorities, but I have to be – I need to be way better at if it doesn’t fit in these three buckets. Then it’s a you know, I’ll support you, but I can’t take it on because I struggle – I take everything on. And that’s a problem.
Adam: So, do I.
Adam: So, do I.
Kristy: So, that’s not good because then you end up not like I don’t like not doing things well, and then you fall into that trap a bit.
Adam: Yes, absolutely.
Kristy: OK, so, we have talked now for quite a while and I feel like I could just talk to you all day, but I want to be respectful of our time. Can you share with us and I’m just going to pull up my wrap-up notes, first of all, I don’t need a note to thank you for giving us your time today. I’m so grateful that we fell into your bucket that you say yes to. I’ve – your story is so impactful and there’s just like you said, there’s so many layers there that I would like to dive a little bit deeper into and you know.
Please do keep me in mind as you flush out the support for parents. Because I sure could use that and I’m happy to help you with that in any way that I can. That falls into one of my goals so, I’m allowed to say that.
Adam: I love that and I will definitely be in touch Kristy, you’re on my list of folks that I already had before we even talked today just because I know a little bit about your story and how it’s been. I appreciate your kind words and I will definitely keep you in the loop for sure.
Kristy: Thank you. Can you tell everybody our listeners where we can find you? So, your you know, where can they find you online?
Adam: Yeah, well, I mean, this part is always a little bit astounding to me as well because I made it somehow 35 years without social media, and the reason I started an account was – I know, right.
The reason I finally started in on the Twitter was because I wanted to find people I needed that connection and that was the only way I could do it. And then the pandemic hit so, it’s been the avenue for me so, yeah, I made an account on Twitter it’s @rarediseasedad. And then same for Instagram, the IG.
Kristy: The IG, yeah, the hashtag IG.
Adam: And then I have my website rarediseasedad.com and those are probably the three best places you can find me. There’s links to my blog there and a couple of other resources, some different podcasts that I’ve been able to be on. I’ll get a page going up there when I do have some more resources for parents as rare and start having more of those conversations.
To hopefully build some community there. And yeah, so, those are probably the best place. There are a couple of other folks that have gotten me on some new apps. You know, this new fangle technology I don’t know how to keep up with it.
Kristy: It’s it is not good.
Adam: But a couple other apps that we might stumble across each other too now.
Kristy: Are you on the TikTok yet?
Kristy: No, I’m not on the TikTok either and I don’t plan on being on the TikTok.
Brenda: No, tiktoking.
Adam: I don’t think so, I don’t think so either. No, yea, TikTok. I’m not even on Facebook. I used to call it the face chat or what you know, I don’t know what it is snap book, what –
Brenda: The fucha book. Yeah, yeah.
Adam: I’m not on any of those, the one I just stated was Clubhouse which is a useful app to be able to kind of check in with some folks in an audio form. Yeah, that’s it, Twitter and Instagram and my website rarediseasedad.com those are the best ways to get in touch with me. And my email you can send me an email through that as well. But I’m always willing to have conversations.
One of the things I do have as a goal is to continue to make connections and have discussions with and support folks in the rare disease community at large. And the other one is to find and make connections with parents that are either impacted as a rare disease patient chronic illness patient and disability and those are some of the things that I’m going to be continuing to work on.
So, I’d love to you know, be a support to anybody else that’s out there that’s having some similar struggles. Because like Kristy said earlier on even if you can find that one person to make that connection with to have that conversation with, it can make all the difference. And I’ve experienced that firsthand and would love to hopefully pay it forward a little bit like so many others have for me.
Brenda: I’m going to stalk you right now. Follow stalk whatever you want to call it, I’m going to do that right now.
Brenda: I loved our chat today.
Kristy: I loved our chat, thank you so much Adam, and I guess that’s a wrap on today’s episode. You can find our podcast in all major libraries including Apple Podcast, Google Podcast, and Spotify. And we would love it if you could leave a review on your favourite platform because that will help others find us as well. So, gosh, thank you. Just thank you for all the work –
Adam: I appreciate you both. Thanks Brenda, thanks Kristy.
Brenda: Thank you so much, OK. Take care. Bye.
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