Jessica Fein: Welcome. I'm Jessica Fein and this is the “I Don’t Know How You Do It” podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable. I'm so glad you're joining me on this journey, and I hope you enjoy the conversation. 

Welcome back to the show. We have talked with a lot of guests about diagnostic odysseys, but we have never had a story quite like this. Today's guest, Mackenzie Abramson spent more than 20 years searching for her own diagnosis.

She fought intense medical gaslighting, she had 30 surgeries, and ultimately went through a mental health crisis. Along the way, she earned her master's degree in public health and worked on global health initiatives in [00:01:00] Rwanda, Egypt, and on the front lines of the COVID 19 response back in the U.S. Talk about turning your pain into purpose.

Today, Mackenzie works at Global Genes, and her personal mission is to support people in the rare and complex disease communities so that everyone feels they have a voice. We spoke about unchosen resilience, finding hope, and the balance between advocating for yourself and advocating for others. Without further ado, I bring you Mackenzie Abramson.

Welcome Mackenzie. I'm so happy to be sitting here in person with you for this conversation. 

Mackenzie Abramson: Yeah, thank you so much for having me.

Jessica Fein: And you know, here we are at the Global Genes conference, which I know you had quite a bit to do with in terms of the planning. So first of all, hats off to you. 

Mackenzie Abramson: Thank you.

Jessica Fein: And it also feels particularly fitting as we talk about your experience with rare disease, both personally and professionally to be in this setting.

Mackenzie Abramson: Yeah, this is the perfect place. I get to wear multiple hats in my life and quite frequently [00:02:00] lately, they kind of seem to melt into one hat, which is really cool when like passion and the profession go together, right? 

Jessica Fein: That I think is kind of the ultimate thing that we're all striving for. Yeah. Yeah.

I'm still trying to figure it out So your journey with rare disease goes back to about your mid 20s. 

Mackenzie Abramson: Yeah, so I was diagnosed in my mid twenties. My undiagnosed journey started at 18 months old, and I was not formally diagnosed until I was 25. So, yeah, my first major medical emergency, I was hospitalized with a really severe kidney infection.

It turns out my ureters weren't connected to my bladder, which is a connective tissue issue. 24 years later, I was like six surgeries on my ankle for one single broken bone, just wasn't healing. And then I finally found. Someone taking me seriously and they're like, I think you have this thing. Ehlers Danlos syndrome.

I was like, I have no idea what you said, but cool. Maybe I'll get some answers. And it was, yeah, a really long time. That's where it all started.  

Jessica Fein: I mean, we talk about diagnostic [00:03:00] odyssey, but my God, that's like odyssey times, you know, a bazillion. Right. What did it feel like to finally get a diagnosis after all that time?

Mackenzie Abramson: A relief. A relief. And then it was also misleading in a way. I was like, okay, I have a diagnosis. I mean, so I'm going to get answers and I'm going to feel better. And that was not the case. And we do know that it's genetic, but no one else in my family has it like I do. And even since then, I've had more diagnoses.

And so I really thought that like, okay, I have this answer. My whole life makes sense now, which it did. And I'm so thankful for that. But at the same time, it was, there's no treatment. There's no cure. We can give you pain meds. A lot of doctors were like, I've never heard of that. Are you sure it's real? I think my parents felt the most relief because they were like, Oh, all those doctors that called my daughter crazy or dramatic, which I'm sure I was some dramatic sometimes I'm a redhead, you know, we have lots of attitude.

So. I think they felt a huge relief and I thought I would too and I did [00:04:00] for a little while and then it was like, okay, but nothing's changed. Nothing physically has changed, like at least the knowledge is there to be able to tell people, but there was still, I mean, this was almost 10 years ago, so there was still a really long way to go and teaching people like, here's what my health is like, and here's why I'm sick all the time.

You know, teaching doctors how to spell my condition name. 

Jessica Fein: And meanwhile, you had not heard of it. You were diagnosed and then people were even doubting you that it was real. So let's talk a little bit about medical gaslighting and what does that mean? And what does that look like? 

Mackenzie Abramson: Oh, man. You're like, there's no way to talk a little bit about it.

Yes. Well, first of all, I gaslit myself and I didn't know you could do that. But for a long time after hearing people tell me like, she's just anxious, it was like, okay, well maybe it is all in my head. And then it was like, you know, I don't know any other 18 year olds who have had six surgeries for one broken bone.

So maybe something is wrong. And. I was going to school to get a medical transcription degree and then I got into public health and I was like, Oh, [00:05:00] I know how to do my own research now and that I'm really fortunate for because that changed it for me I was like, well now I know how to read a publication and I know how to read peer reviewed articles And I know how to access one So maybe I'm not crazy and I started doing my own research and There was still a lot of gaslighting because I would show up to doctor's appointments then like do you see all these things these people?

Symptoms too and And they're like, you know, don't, don't worry about that. That's my job. And I'm like, okay, well, you're not doing your job. Do you still get that now? Yeah, my most recent diagnosis earlier this year is a rare neuromuscular autoimmune condition called Lambert Eaton Myasthenic syndrome. So my conditions I've previously had were managed relatively well.

About three years ago, I'm not really sure what happened, but there was a very clear shift in like new symptoms, worsening of symptoms I already had. And just progression of those. They weren't stagnant. They got worse. They didn't just show up and stayed there. They are continually getting worse and new and new things [00:06:00] happening.

And I think I went to like six or seven rheumatologists that basically said, well, you don't have, you know, the standards, so we can't help you. And I was like, well, can you test for this? And can you do this? Cause now I've been in this space a while. And most of them were like, no. Um, and I'm like, it really doesn't cost you anything.

Like, come on. They're like, that's not in our wheelhouse. And so I did go back to my cardiologist who's been treating me forever and they listen. And I think that's a huge difference. And they're a cardiologist, but they're like, yeah, we'll order you an autoimmune panel. 

Jessica Fein: But it makes me wonder, what about the people who aren't in this space?

Who don't have the knowledge, who don't know how to read the medical journals. 

Mackenzie Abramson: Yeah, it's so interesting you say that because I still basically do like translating of all that kind of medical stuff for any friend or family member that I know and so they're always like we're so lucky to have a Mackenzie and I'm like well everyone needs a Mackenzie, right?

How do we bottle this and like make that something that everyone can do? I was recently at another conference focused on [00:07:00] AI in the medical world, and it's a great tool. And so like, why are we not building a system that can, in layman's terms, translate these medical journals for people to understand or transform them to be at a reading level of someone who maybe didn't go to college or is in a rural area or English isn't their first language.

And so how do we make it accessible to everyone? And I think that even if you don't know how to do those things. Ask questions. I'm finding like, especially younger doctors and newer to the field, doctors are more than willing to help or set up more time to help rather than you having to figure it all out by yourself.

Jessica Fein: You know, I wonder, because we're sitting here together, as I mentioned, and I'm looking at you, and first of all, for anybody who's, you know, our listeners are not going to be seeing you. You're this beautiful woman, and you don't have what I can see sitting here, visible disabilities. And I'm wondering if you have even greater medical tasks, like, and because people don't look at you and [00:08:00] think, ah, there's a diagnosis.

Mackenzie Abramson: 100%. Um, this morning I actually moderated a panel called Living with Visible and Invisible Disabilities. My two panelists that were with me, one is in a wheelchair, Kendra, and she's never had anything else. You know that she has disabilities. Richie was diagnosed when he was older and he's losing his vision.

So unless he has his cane, you would not know he had a disability. And for me, like, like you said, no one really can ever tell. The only time I think people can tell is like, oh, I'm having surgery. Which is pretty common for me, or if I'm using my handicap placard. I do have one. I have been told many times, the gaslighting things of like, you should save that for someone who needs it.

And I'm like, well, I have a heart condition and I've had 30 surgeries, so come on. 

Jessica Fein: Dalia was in a wheelchair and we had a handicapped placard. And my husband is like, so totally aware of every single car that parks. And if he sees [00:09:00] somebody who gets out, and I'm always like, you don't know.

Yeah. Because if he sees somebody who just like, you know, gets out and bounds on down the street. And I always say, you have no idea.

Mackenzie Abramson: Yeah, it's really hard. Again, I'm only representative of me and I do have some privileges that a lot of other people don't. I grew up in an affluent area. I came from parents who, you know, went to school and, and all of these things.

But, um, there are a lot of people that don't, especially as a woman, like we're already disbelieved a lot in the medical world. Like the fact that anyone could ever tell us, like, maybe that's an OB issue is the most infuriating thing. I know people think it's a joke when you say like, Oh, she's just PMSing.

And I'm like, I don't think you understand for some people that's really serious and leads to other health issues. Like these are not things that you can see, but people just assume you're fine. And then that leads back to the PTSD and the trauma, and it just continues and prolongs it. It's so preventable.

We give people the benefit of the doubt. Why do we not do that always? We do it in certain [00:10:00] settings. We do it, you know, in the courtroom. People are innocent until they're proven guilty, right? Like, why are we not giving this benefit of the doubt to any patient who says something is wrong with me? Like, I know my body, something's up.

It's wild that we, we don't. 

Jessica Fein: Agree. You started off doing global health initiatives, you did a community health needs assessment in Rwanda. You worked with the World Health Organization in Egypt. Yeah. What was it like working in those settings, particularly with your own health challenges? 

Mackenzie Abramson: It was really interesting.

So I was in Rwanda first and, you know, Rwanda is. It's a very different place than here. I was staying with my host family and every day we would go out in their car and drive to the villages. And it would take us, you know, four or five hours to get there to spend 30 minutes with someone. And I'm like, how are these albinism patients receiving their health care?

They're like, they're not, they don't receive healthcare. And if they do, they usually lose their homes or [00:11:00] something else. And I'm like, so what happens? And you know, it's mostly rural. They're in huts. Most of them don't have homing. They don't have any sort of infrastructure. That's just not how it is in most of Rwanda.

It's actually pretty interesting because albinism is linked to the redhead gene. If you do a lot of research, So they were like, Oh my gosh, this young white person also has albinism. I'm like, no, but we're close friends. And so they were so hopeful that like, Oh, someone's here and they want to study us.

And they want to help us that it was interesting to hear that because most of them have really poor vision because what albinism, the way that works. And they also have a lot of skin cancer, especially in Rwanda because it's near the equator. And there's no oncologists in rural Rwanda. And so they don't get.

to get treatment. And then going to Egypt, I got to work in infectious disease, disease verification and risk assessment. It was just so eyeopening about like, wow, I am really fortunate that I live in the U. S., but at the same time, then I think about, okay, well, the [00:12:00] challenges I faced, you know, I was living in San Francisco at the time having to fly to Virginia to receive care.

I'm like, gosh, this is such an inconvenience, but also what if I didn't have that option? And what if I didn't have parents that could help support that financially? I don't really know what would have happened to me, but I definitely don't think I would have been here. 

Jessica Fein: You also worked as the disease investigations manager through the pandemic.

And I'm so curious about that.

Mackenzie Abramson: So I graduated with my master's in public health in May of 2020. So it was a perfect time. In a manner of speaking. Yeah, perfect time, unfortunately, I guess you could say. And I worked for the county that I was in. It was called Quad Counties in Nevada. And it's rural healthcare.

Okay. And that was also really, really different because, you know, it doesn't really matter what your political affiliation is, but when your health is on the line, I feel like we should be bipartisan and put all of those things aside. And it was really interesting to see that that's just not how things were [00:13:00] done.

And it was like, you know, right after an election and all of these things. And a lot of people where we were, where, you know, how sometimes there's protests outside of like Planned Parenthood, there were a lot of protests on like, COVID is fake and COVID is all of these things. And I worked at a state health department and they're saying like, you guys are the problem.

You just need to keep your jobs. And I'm like, there's a. So crazy to me, because all I want to do is make sure that people can get the resources they need. And that was my job. I managed the team that did the COVID investigations and the contact tracing. And then we provided them with the contacts to get the food to their house when they couldn't leave when, you know, the six of them living there are sick.

And we made sure that they had places to isolate if they needed. We were also leading the vaccine initiatives. And it's really interesting because then you think about people in our rare community and how we got there and It's hard because a lot of the immunocompromised and the rare community who can't get vaccines, like, all I wanted to do is shake some of these people and be like, you [00:14:00] could save people's lives if you just would go and take care of this.

Jessica Fein: And were you at all scared about your own personal health as you would go into, first of all, these exotic locations, but also even here domestically, but into kind of the belly of the beast, so to speak. 

Mackenzie Abramson: Yeah. Especially while I was in Egypt, I was there for a lot longer. I was there for almost four months.

Work took a toll and it was like, I can't, I can't see anyone here. No one can really help me with medications and all these things. And so. Yeah. There were definitely things I wish that my health wasn't like the driving factor, but my fiance and I just moved to the East coast. And even that was like my health and my, most of my doctors that really understand my conditions are in DC and in Virginia.

And so it was like, well, this makes more sense than spending money to fly across the country five times a year. You know, I would say I was worried about it, but it impacts every decision I make in my life. 

Jessica Fein: You mentioned that you just recently [00:15:00] had yet another health crisis, and that one really took a toll.

And I'm wondering, you said it affects every decision in your life, but how does it affect your work in advocacy? 

Mackenzie Abramson: It reinforces why I want to do what I do for the rest of my life, because, I mean, even my coworkers, when I'm like, I have to go to this doctor's appointment and well, here's what happened. And they're like, Oh my gosh, Mackenzie, we need to tell people so that, you know, they can feel like they're hurt.

And so that then they can ask us questions and you can help them. And I'm like, okay. Yeah. 

Jessica Fein: Yeah. And I guess it goes back to what we were talking about, blending the personal and professional. 

Mackenzie Abramson: Yeah. And I think that it just goes to show that like. When you do blend them, it's just so much easier because I have no issues talking about like my mental health was bad before I was able to get this diagnosis because people were telling me that nothing was wrong.

And I'm like, clearly something's wrong. And I think that being able to have that openness with people and just kind of share that, like, Hey, I'm not crazy. Here's what's happening in my life. Maybe it's happening to you too. If you'd like to [00:16:00] talk about it, it really just helps. 

Jessica Fein: Oh, well, I think just sharing and being open and being vulnerable helps in so many ways.

But I think that, you know, in a lot of workplaces, it would not be welcome to be touching this candidly. Yeah. That's very true. You mentioned that you faced a mental health crisis recently. Yeah. And that that was a real tipping point for you. What happened?

Mackenzie Abramson: We had just moved to the D. C. area last November.

And in the span of about eight months, we moved everything in our animals across the country. We also got engaged. Congratulations. Thank you. Thank you so much. But he's a teacher, so he had to quit his job to move. I was working remotely and the day, basically the day after we closed on our house, we found out my company was getting acquired and I no longer had a job.

And so we were like, okay, well, we already bought this house. We've got to go through with it. And it was just a lot of things. We lost a dog after we moved and. My health got really bad and I didn't [00:17:00] really know what was happening at first, but there was a lot of mornings where I was waking up in tears and I was preparing to have a hip surgery.

My hip was out of place most days, which is common in Ehlers Danlos syndrome. You have joint issues and it was just painful. So it was really driven by pain, but a lot of life things happening all at the same time, and there was never any like, Suicidal planning, but the ideation was there. And I was telling my therapist, you know, like, I just don't care if I wake up tomorrow, mostly because that means I won't feel pain ever again.

And it took like two or three sessions of me saying that regularly, which in the grand scheme of things. This had been like an eight week period of, wow, something's wrong with her. My parents knew, my fiance knew, my best friend, they were like, she's not herself. Do we need to, you know, seek help? It just sort of blew up.

And I told my therapist, I'm like, can we call a psychiatrist? I think I need medication. Like, I can't do this anymore. Cause I don't, I don't know what's going to happen. And she was like, I think that's a wise choice. [00:18:00] I was like, okay, let's do it as soon as possible. And having it be my choice, not a forced choice, I think was really important.

But that's also really hard to like get to, but choosing to go on medication to find joy and things again was the best decision I made this year. And now I'm like, everyone should go see a therapist because we all need it, first of all. But also, In this realm of rare disease, whether you're a caregiver or you're a patient or you're a genetic counselor who's always delivering bad news, all of these people are going to experience trauma in one form or another.

And if we aren't giving mental health care at point of care, so when you get a diagnosis or when you're going through the undiagnosed journey, you end up like me, 25 years later with lots of medical trauma and the gaslighting is happening. And it's really just this point where you're like, I'm either. No longer going to, you know, be a functioning person or I'm going to change it and maybe that's just my personality, but it was at the point where I wasn't functioning [00:19:00] anymore.

And the people that I do want that do care for me, were really worried.

Jessica Fein: You had mentioned before we started that this was something that you wanted to talk about. I can even see how you are sitting up and it's so important to you. And I just applaud that because I think so many people don't want to share this.

They think that, you know, they'll be judged or they're just not comfortable. And I think what a gift that you're sharing this.

Mackenzie Abramson: Thank you. It's part of my new mission in life is how do we change this? Because yeah, if you're not getting help and you're not open about it and no one's ever going to know. And that in itself is perpetuating, you know, the cycle of only going to get worse and you're going to get sadder, but everyone wants to help.

And everyone just wants to be there for you, that's what I've found. And like, no one wanted to see me so sad, which is really like, it just made me feel good. But also I knew I couldn't snap myself out of it. I was also one of the people that was like, no, if I have to go on medication, people are going to judge.

And if I tell my boss, they're going to judge. Granted, I work at Global Genes [00:20:00] and they are very, very understanding of like all the things, but you know, not everyone gets that, like you said. And so I think that. Having that as my experience again is a privilege, but also there are ways to go about finding the resources, making sure your work has accommodations and all of these things that you might need for yourself to be a functioning human.

Jessica Fein: But what would you say to somebody, because I mean, you are an advocate, and what would you say to somebody who said, I am feeling lousy physically, I'm feeling lousy emotionally, and I do not have the kind of workplace where I can share that either. I'm totally replaceable. Or, I'm at such a high level that I'm expected to be on the quote unquote top of my game and I can't share it.

What do you tell them? 

Mackenzie Abramson: It's so hard. It really is. And I get that. But I think that you have to be true to yourself and your journey. And sometimes that is going to be hard. And that means making hard choices. So if your work isn't going to support you, make sure your family is. If your work's not going to support you, make sure your friends are.

Make sure there is someone. [00:21:00] Make sure your therapist is supporting you. Everyone needs a therapist. And make sure you have someone that is there to be an advocate for you. I have those things. I didn't know that I had them as strongly as I did until I was like, I need to go on medication. And again, I've had bosses in the past who are like, yeah, I take a mental health day once a month because I need it.

And I'm like, Oh, you put that on your calendar? And they're like, no, I don't say it's a mental health day. I just take a sick day. I'm like, okay, so I guess you don't have to share everything, but you know, everyone is entitled to their privacy. And I said in a panel earlier to an audience question, you can't make someone be an advocate.

They have to want to, and if they don't, that's okay. But they need to be able to advocate for themselves. There's a difference. Like I, I choose to advocate for others. But if I didn't advocate for myself again, I don't think I would be here. That to me is the big difference because any person can go to their HR, whether you have a rare disease or not, you are entitled to accommodations that are the law in the U.S. Like there are [00:22:00] these things that can help people and pretty sure most companies have an HR department. So if it's only between you and them. That's fine. And I would just say, you know, chat with them. You cannot get fired for your health. That's against the law. Some people don't even know that.

Jessica Fein: Probably most people don't even know that.

So what about somebody who needs to advocate and doesn't know how? How can you learn to be a self advocate? 

Mackenzie Abramson: There's so many ways. First of all, just start having conversations with yourself that this is what you want and knowing that that's what you want and then finding your community. So I'm going to, you know, shout out Global Genes.

We're here at a Global Genes conference. This is where I started. Um, and then I even from Global Genes went to my own patient advocacy group with LRS Danlos Society to start. I've worked with a lot of patient advocacy groups and I think that Once you find people who have similar experiences to you, you'll find that telling your story is so much easier, even if it's not the same condition, right?

You were a caregiver. I bet if you and my mom had a chat, you guys would [00:23:00] find like guilt, trauma, helplessness. These feelings that are so relatable happen in every caregiver that's out there, right? So all you have to do is find one other person, which can still be hard. So. You know, use social media. We live in the age of technology and find things like Global Genes, like the Every Life Foundation, anywhere that does advocacy on a regular basis.

Just ask them, like, how can I get connected? What do I need to do? Or maybe I'm not ready to get connected, but I'd like to know what do you have available for me to read so that when I'm ready, we can work on it.

Jessica Fein: Right. And I think that that is such a good point about social media. It's such an easy way to connect.

Yeah. And there's so much content out there that you can get. Whether that's through a podcast or a book. Yeah. There's just so much available now that there wasn't. Right. Not that long ago.

Mackenzie Abramson: Right. And you know, we basically all carry computers in our hands, right? So, you know, get on Google, start Googling.

There's going to be someone out there who's going through something similar. [00:24:00] 

Jessica Fein: You are your best personal advocate. You spend your days advocating for others. First of all, are you ever like everything is heavy? Like I'm doing all of this intense stuff personally and professionally. And I know we were talking about how beautiful it is when personal and professional passions are together, but sometimes are you like, I just wish I did something more frivolous?

Mackenzie Abramson: Yeah, I do. I do feel that way. Advocating for other people is so easy for me. Advocating for myself, I had to be taught. And even now, when it comes to my health care, I'm like, I just don't do it anymore. I am tired. And then, you know, an hour later I'll be on a call helping someone. And it's just so easy because if I can do that for someone, then I feel good.

So it's kind of like twofold. It fills my cup, but it also drains my personal life at the same time. And finding balance has been. Really hard. I think that again being in therapy helps like figure out why don't I just go out in my garden? Why don't they just [00:25:00] cuddle the dog because that brings me joy, but there are there's so many days especially on appointment days where maybe I have to drive an hour to get to an appointment that turns it into a long day and All of these things where I'm like this sucks It really does.

It's just so frustrating. And I'm lucky I have a diagnosis now, but like I got that diagnosis in May and I don't get to see the doctor until January 29th of next year. So what am I supposed to do until then? And so these things that like, I'm just tired, I'm managing based on my symptoms, even though I know there's potential treatment options, I can't see that specialist, those are the kinds of things where it becomes exhausting.

And then you go, why do I do this? And then you get to go help someone else and you're like, Oh, that's why, that's why I do this. 

Jessica Fein: The people on the other end are so lucky because I can imagine that having the personal experience gives you such a different kind of passion. 

Mackenzie Abramson: Yeah, it does. I, I've always been an empathetic person.

Before I got diagnosed, I wanted to be a nurse and I, I just knew that I wanted to [00:26:00] help people. I couldn't be on my feet all the time. So I was like, public health is the way to go. And then being able to take public health and do rare diseases, like, Wow. Well, my life is set now. This is the best thing. But I do feel emotions really deeply, which can also be a blessing and a curse at times.

There's times where it does just hit you and you're heartbroken. You're like, I just need a break. I need to unplug, do all of those things. That's right. The garden and the puppy coming. Always a nice dinner, a movie. Usually comedy. Comedies are good. Also, a new thing I've learned in therapy is two things can be true at once.

Jessica Fein: That's like my mantra. Two things can be true at once. 

Mackenzie Abramson: And it's so hard. And we've been working on it for a while now, but like, this sucks. But also it has given me a platform to do really good things, but it still sucks. 

Jessica Fein: Yes. 

Mackenzie Abramson: And allowing those to both exist at the same time is so hard, but [00:27:00] once you are able to do those things, like today's appointment was really bad, but.

I'm one step closer to what's next, right? Those kind of things are life changing, 

Jessica Fein: Life changing. And it was such a big discovery for me because we had so many years of living in anguish and sorrow and fear and all of those horrendous things. Yeah. And We could find joy and beauty and meaning and have good days and those things could coexist.

And it's not intuitive. It would seem that things would be mutually exclusive.

Mackenzie Abramson: Yeah, black and white is not how it has to be. There can be all the beauty. Right. And understanding that it's also not linear, right? My bad day today might be a really good day tomorrow, but that doesn't mean I'm not still sick.

Jessica Fein: Right. 

Mackenzie Abramson: I'm still very sick. I just had a good day. 

Jessica Fein: What advice do you have for others who are navigating the intersection of chronic illness, rare disease, and mental health challenges? 

Mackenzie Abramson: My biggest piece of advice is, again, [00:28:00] you're the lived experience expert, whether you're a patient or a caregiver, and you know yourself, you usually know your child best.

Don't be afraid to speak up and voice your opinion. I know that's not easy. Took me a very long time to be comfortable with telling a doctor I think they're wrong. Being able to do that, though, changed my life. I was like, thank you. I appreciate your opinion, but I'm going to go see another one. And to keep going.

Yeah, to find another opinion. Earlier this year, during Rare Disease Week, I made a post about unchosen resilience. Everyone is born with resilience. That's the nature of being human. Like we just keep going even when things are tough. When it's unchosen, especially in this community, like what other choice do I have?

You know, some days I have bad days. But if I stopped, I would just basically be in bed every day or my mental health would get to where it was earlier this year. So it's unchosen that I have to be this resilient, but I am and tapping into that and turning it into a good thing. Like again, [00:29:00] yeah, this sucks, but.

This resilience also empowers me to then do these things. Like I never thought I was going to go to grad school and here I am. Right. And you know, I never thought I was going to get on stage and speak to hundreds of people, but here I am. And all of these things that I didn't know I can do, and then empower other people to also do it.

And so my advice is, first of all, if you're struggling with mental health, don't feel like you need to keep it a secret, ask someone for help, or just tell someone that like, I'm struggling. And also, is it opinions or do you need suggestions, right? And, and telling people which one you need at that time is something I found that helps.

Jessica Fein: Can I add a third, opinions, suggestions, or just listening. You don't have to have an opinion or a suggestion. Maybe I just want you to listen. 

Mackenzie Abramson: I just need to vent, right? So yeah, I think if you're struggling, definitely do what you need to do to make sure that you can be whole, but also in that intersection of rare disease.

The moment. If you or your family know that you're going through something like [00:30:00] this, start getting help for your mental health right away. Even if you don't feel you need it, at some point you will. And it's just building tool to use, right? Like we were just talking about them. Those are all tools that you can use so that your child or your family member who you need to explain to about your rare disease can use to then empower other people.

And that's all it is learning to build your toolbox so that you're never left for like with a flat tire, essentially. Like we just need those in our back pocket for when things get tough. 

Jessica Fein: We're at this conference and the theme is “There’s No Place Like Hope.” How do you remain hopeful?

Mackenzie Abramson: Oh, man, I think I remain hopeful because I get to do what I do and I love it, which is hopeful. I work with people from industry who are like, I want to hear your opinions. I get to have an impact and seeing the progress from when I was diagnosed at 25 or 26, whenever [00:31:00] I was diagnosed to now, just in my conditions, like the fact that we have people studying it, we have whole research centers on it now.

Those are the things that make me hopeful. Working at a company like Global Genes is what makes me hopeful. People who are so empathetic and understanding, like you, who are giving others this platform to have these discussions, that's what makes me hopeful. And then knowing that we have that impact to keep people going, there's been people who have said like, without your story, I wouldn't have done this.

And I'm like, cool, like I'm somebody's hero, you know, like this thing has happened and I don't think anyone sets out to do that. But when it happens, it's just hope bottled up and handed to you. 

Jessica Fein: Hope bottled up and handed to you. That is like the perfect message to end with. And I feel like we could all use a bottle or a six pack of hope right about now.

Thank you so much for coming and sharing with us today. 

Mackenzie Abramson: Yeah, thank you so much for having me.

Jessica Fein: Here are my takeaways from the conversation with [00:32:00] Mackenzie. Number one, you are your own best expert and advocate. Trust your instincts and speak up for yourself. 

Number two, just because people can't see your pain doesn't make it any less real. Try not to gaslight yourself. 

Number three, don't wait to seek help. Build your mental toolbox early, even before you think you need it. Having strategies in place for tough times makes a huge difference. 

Number four, you do not need to be solving big problems all the time. The small things that bring you joy are just as important and will replenish your energy.

Number five, two truths can coexist. You can feel gratitude And feel like this sucks at the exact same time. 

Number six, which we hear all the time, find your community. 

And number seven, resilience can be unchosen and empower things you never imagined you could do. 

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I'd be so grateful. Have a great day. Talk to you next time.