About Lynn Lafy

Lynn Lafy has spent her career specializing in Human Resources in industries such as oil, roofing, and now staffing. Lynn previously worked with AdNet in the late 1990’s in an operations role and now serves as AdNet’s HR Consulting Team Lead. Lynn has dealt with chronic illnesses for most of her life, and it is a passion of hers to ensure the disabled community is being fairly treated in the workplace.

About Sydney Blondell

Sydney Blondell is a queer and disabled author, best known for her book The Stars in My Heart – an OwnVoices disability representation YA trilogy. She holds two bachelor's degrees in English and Professional Writing from Bridgewater College. Sydney is also the Administrative Coordinator at AdNet.

Episode Transcript – Invisible Not Broken: Navigating Disabilities in the Workplace

Betsy Cerulo: Welcome to Room at the Table, an opportunity for you to join me, Betsy Cerulo and my guests for conversations about creating equitable and inclusive workplaces where leaders rise above mediocrity and our teams thrive. Pull up a chair, there's always Room at the Table. 

Welcome to another meaningful conversation on Room at the Table. I am Betsy Cerulo, your host, and welcome to my guests today, Lynn Lafy, AdNet’s HR Consulting Team Lead, and Sydney Blondell, Administrative Coordinator, also at AdNet, and an indie author in a disabled community. And her books are magnificent. They are page turners, and I highly recommend you look her up and buy all of her books. So today, we're talking about invisible illnesses. What does that mean? And how difficult it can be to navigate disabilities in the workplace. So pull up a chair, enjoy your favorite beverage, and let's get started. So welcome to you both.

Lynn Lafy: Thank you for having us.

Thank you for taking some time out of your busy day. Listeners, as you heard, both Lynn and Sydney work for AdNet, and they are just amazing women who have taught us all about this really important topic of invisible disabilities. So let's jump right in it. Tell the listeners, Lynn, let's start with you, what an invisible disability means. 
 

Okay, so first of all, just a simple definition. An invisible disability or illness is something that is not visible to the naked eye, shall we say. It could be mental health issues, whether it's severe anxiety or severe depression that someone learns to mask. It could be Crohn's disease, lupus, Alzheimer's in its early stages, or rheumatoid arthritis, celiac disease. There's so many different diseases that people deal with that if you don't know, you wouldn't know. So that's, that's what an invisible disability means as a definition. 

Okay, Sydney, what would you like to add?

Sydney Blondell: I think Lynn pretty much covered the definition. Invisible illnesses mean just that. They're invisible. No one can tell just by looking at you that you have anything going on in your body. You look, quote, normal.

So that segues into the next question. What reactions do both of you experience when you say you are disabled?

Okay, I'll start. I get a lot of the time, “But you look fine.” Yep, I look fine. Another reaction I get is unsolicited advice, so lifestyle advice. Well, have you tried eating gluten-free? Have you tried this diet, insert whatever diet here? I'm overweight, so the big thing always is, “If you lost weight, you would feel better.” But what people don't know is a lot of the medications that I take prevent me from losing weight. The mobility issues that I have with several of my autoimmune diseases prevent me from moving as a quote unquote normal person, so that extra weight is really hard to come off but there's that. And then, another one is, well, if you stop taking so much medicine you would start to feel better because it can't be good to have all those chemicals in your body. But what a lot of people don't know is that the medication that I take, and yes it is a lot, has allowed me to get my autoimmune issues under control so that I am able to function a little more normally than if I didn't take it. I'm one of the lucky ones because there's medication that can help my autoimmune issues. But if I had Alzheimer's or celiac disease, there's not a medicine for either of those. For celiac, you can do a lifestyle change, but there's no medication for all of the invisible illnesses out there. So those are kind of the reactions that I get. The main one is the lifestyle advice and the, well, you look fine.

So, Lynn, when you shared the unsolicited advice that you get, I'm just curious, do you find that the unsolicited advice comes from people close to you who love you or people that you don’t know?

Both. Really, people have no problem giving unsolicited advice whether they know me or not. I know that the advice from those that love me comes from a place of love, but it's just not being educated on my particular ailments.

Yeah, and I ask that because sometimes it's the people that love us that are just the hardest on us, that have the least breadth of patience or understanding sometimes. At least that's what I experienced sometimes. Like, the unsolicited input. I think to myself, “You're supposed to be on my side. Doesn't sound like it.” That's why I asked that question.

Yeah, it's both. Probably more from people close to me, but it does come from strangers as well.

Sydney, how about yourself? What reactions do you experience?

For me, a lot of times it's, well you're too young to have anything wrong with you. When in reality, I have been dealing with all of my ailments and trying to find diagnoses and all of that type of stuff since I was 12 years old. A lot of times you do research and find that trauma can be a trigger for getting autoimmune issues and stuff like that. Around 12 years old, I experienced some things that were very difficult to go through and that kind of catapulted my chronic illness journey. But mainly, the reactions that I get are I'm too young to have anything wrong and I look fine, like Lynn said.

You know, it's interesting because one of my best friends has MS. Again, invisible disability, nobody would think anything. She would have these incredibly terrible flare-ups. So when she kept kind of drilling it back on what it was, whenever she would travel up to New Jersey to visit her family, there was a lot of tension. And soon after she would return back home, she'd have the flare-ups. So sometimes, stress just creates incredible disabilities, and sometimes, it's easier said than done, like when someone says, well just remove yourself from the stress. Sometimes it's easier said than done. And then you add whatever disability one may be challenged with, you add that layer of stress, whether it's stress in the workplace or it's stress at home, that seems to just compound the end result of what your body is feeling. So let me ask you both, and I'm deviating a little bit here, and Syd, I'll start with you, when you come up against something that you know is going to be stressful or you're anticipating that stress, what actions do you take to kind of protect yourself?

Sometimes, I don't really have a choice. Sometimes, I have to just be okay with sacrificing my health for whatever activity is going on. After 12 years of being diagnosed with POTS, I know what my triggers are, and so if I know that something is going to take place that is going to trigger a migraine or body pain or whatever it manifests in, sometimes I just have to say, okay, this is going to happen and it really sucks but there's nothing I can do about it.

Lynn, how about yourself?

Setting boundaries, I think, is a big thing for me. As Sydney mentioned, autoimmune diseases are sometimes triggered by trauma. As you mentioned with your friend, stress can create a flare and autoimmune diseases do kind of go in that dormant and flare cycle. Part of being healthy physically is being healthy mentally, so a lot of therapy has gone into my life, and so I have removed those stressors, sometimes by choice and sometimes not by choice. So those stressors and those boundaries that I have set are really important to not only my mental health but my physical health. But like Sydney said, there are times when it's unavoidable and you just have to power through and know that it's going to be tough, and you're just going to have to do what you have to do to get through it. And if nothing else, these autoimmune diseases have made both Sydney and I very strong women. So we just do what we have to do.

Yeah, absolutely. And it takes a lot of courage because you have to put one foot in front of the other every day, no matter how you feel.

Yep.

Until you set your boundary and say, no, I’m going to stop.

But there are some things that you can't set a boundary on. There's life. You do the best you can. But living with these invisible diseases, you know that there are going to be periods of time when you just really feel awful and there's nothing you can do about it.

Yeah. So let me go into another question. What do you think people can do better when it comes to the disabled community?

I think that education is a big part of the community that is lacking. Disabled people in the community are educated and take steps to learn not only about their own illness, but about other people's illnesses. But I think a lot of able-bodied people kind of take the mindset of “out of sight, out of mind. That could never happen to me,” but it doesn't have to happen to you to be educated on it. It could happen to a loved one. It could happen to anyone. But even if you don't have the experience of first-hand knowledge or someone in your life being disabled, that doesn't mean that you don't have to educate yourself. Coming from an author standpoint, there's a lot of books out there now that have disability representation, and it means so much to the disabled community because there was no representation. Up until two years ago, there were no books out there that had representation of my illness. Now there are, I believe, three books. We kind of all published them at the same time. But then there's mental health representation, and just finding community through books or television, whatever media you like to consume. There is representation out there but there needs to be more.

So Syd, when someone says something to you or you witness someone saying something or acting inappropriately toward someone with a disability, how do you respond? What do you do? 

I typically call people out on it. If someone's saying something very ableist, then I say that. If someone's saying something derogatory, using words that we no longer use, I won't say them, but I'm sure people can figure out what words I'm referring to, I call them out. If it's a prominent figure, I call those people out. It doesn't matter if they're not well-known or someone widely known. If you're doing something wrong, you need to be called out on it and be educated, and it's not necessarily the disabled community's responsibility to educate able-bodied people on it, but they also need to be called out. And discrimination of any kind, hate of any kind, it just needs to end.

Agreed. Agreed. So, Lynn, what are your thoughts?

Education, for sure. But I think, as a whole, we just all need to be kinder to each other. I mean that able-bodied, disabled, throughout the world, we just need to be kinder and know that each and every person is going through something, whether it is a challenging day at work, a divorce that nobody knows about, or just a relationship break-up, a woman who has a pregnancy loss. There's so many things that people go through that we, as a whole, as the community at large, we don't know about. That smile or that kind word can make a person's day. From a disabled standpoint, having somebody want to learn a little bit about my many autoimmune diseases means a lot, especially, when they take the time to find out how it affects my body and how I deal with it day-to-day. It just touches your heart in a way. It really shows that somebody cares when they take the time to do that. But that should be a standard for everybody. It shouldn't be like, oh, wow, that's something above and beyond. We should all be doing it, myself included.

Yeah, absolutely. You brought up something about a woman's pregnancy loss. We've had shows on the seasons about grief. But the aftermath for a woman when there is loss of pregnancy is sometimes a terrible depression. And society, as a whole, just does not make enough room for a woman to be able to mourn that loss or to understand it, or why can't you come to work today? Or why can't you do this today? I think it's one of the unfortunate life events that also gets overlooked, terribly overlooked. And I think, too, I could segue into the invisible disabilities. Society doesn't consistently make it okay for one to want to reveal it either because you have people that sometimes are unevolved and just say things inappropriately. I appreciate the people that try, even if they're asking some questions that might be ‘meh.’ But at least you can tell the genuineness in them wanting to understand. I hope and pray that there will just be more people that will have that understanding. That's why we have these conversations because I see that sometimes people that have disabilities, whether they're visible or invisible, are cast over to the side. We all know, including people on our team, who are absolutely brilliant, and whatever work that those people touch would not be as successful if those people were not part of the team. So it is important for the economy, it's important for the workplace that there's just such an embracing and more equity for people that have disabilities because it's a total gain. You know what I mean? But sometimes I get speechless because when people are unkind, I shake my head and I just can't understand what was the point.

Well, you brought up a good point about contributions that are made. When you are newly diagnosed, at least for me, you have such a sense of loss, number one, loss of a life that you had prior to a diagnosis. And then, you also have that feeling of worthlessness. I went through a long period of time where I was unable to work because I couldn't get all of my autoimmune issues under control and that made a huge financial impact on our family. You sink into a depression. Even if depression weren't part of my many diagnoses, it played a part in that part of my life because I felt worthless, felt like I wasn't contributing to society.

And to hear that come from you, having known you for so many years, you're so the opposite in how you contribute. You put your whole self into everything, you watch out for people, you give. So, for any person or people out there who don’t look at the whole person, they’re missing out. This is a conversation that just has to continue because, with the workplaces, again, what's a common complaint we all hear? We hear from our customers, there's not enough good people out there. There would be enough great people out there if the workplaces would get with the program on how to best support all people. So, Lynn, you've been in the workforce a bit. Would you want to share or recommend to leaders in workplaces on how to better equip their workplaces and their teams for people with disabilities?

My big thing and, you know, part of my job is recruiting, my big thing is to take a chance on people. Go with your gut. I'm famous for that, you hear me say it all of the time. My gut says they're a great fit. Some of our clients are learning to trust my gut and they are taking those chances on some of the employees that, maybe, five years ago they wouldn't. But people just need to take a chance and look at a person as a whole and not as a piece, and that piece is their disability or the fact that they haven't worked for three years because they were raising – not three years, it would be longer than three years, like 10 years, because they were raising a family – but there are so many different things that factor into why people may have a gap of in employment, whether it's an illness or raising children or what have you. People just need to take a chance.

Yeah, absolutely. Sydney, from your perspective what would you think? How can a workplace and leaders be better?

I think flexibility and compassion are two big components that leaders could incorporate, whether that's just having a little bit of flexibility with restroom breaks during work or there's a doctor's appointment at one o'clock today. Sure you can take it, use your sick time, or you can make it up. Just being able to have work and taking care of your health is important because if you're not making these doctor's appointments or whatever you have going on, a treatment or something, then you're not going to be able to give 100% in the workplace. They go hand in hand. If leaders could recognize that a little more, then, maybe their companies would be 10 times better because all the employees are happy, all of the employees feel valued and that they're not just a number to the company, they're actually valued for what they're doing.

Absolutely. Sadly, we've seen a couple of our customers who are reputable who don't extend flexibility for, say, some health-related needs. And that, to me, is unfathomable when an organization can't be flexible because an organization is only as healthy as the health of their people. So we can't always have perfect health, but if we can have a perfect scenario to be able to nurture what we need, then that helps to get us on the right track. I think organizations just really need to do such a better job at listening to their employees, paying attention, and Lynn, you had brought up earlier about mental illness. I don't care what anybody says. At some stage in life, people do experience depression, whatever level that's at. You can call it the blues, you can call it melancholy, whatever the case. I think we, as a society, really overlook that. And we know with our work, with people, life hands you situations that are challenging and glorious all at the same time. There has to be room and organizations for people to be able to live, to feel. Do you know what I'm saying? So if someone's having a bad day, whatever that bad day means, to be able to give them the space to tend to whatever they need to tend to. So, I really appreciate this conversation. So I'm going to put you both on the spot one last time.  Lynn, I'll start with you. What would you like to share for our listeners? Any lasting thoughts on how to better serve people with invisible disabilities?

I think the main two things are education and compassion. If you educate yourself on someone's invisible illness, it may provide that compassion for them, and then the person with the disability will not feel so alone and feel like things need to be hidden. “It's a big hush hush, oh shoot, be quiet, we don't talk about the fact that you have rheumatoid arthritis and you can only type with one hand today because your other hand is hurting so bad. That's a big secret.” So just education and compassion.

Great. Thank you. Sydney? 

I'm going to echo education and compassion. I think that  if people started out with a listening ear rather than trying to fix it or say that it's not true because you can't see it, come at it from a standpoint of, “I may not understand it but, yes, invisible illnesses are out there and I just need to take the time to educate myself a little more on how to become a better ally to the disabled community and how to be a better friend.” If someone that your friends with has a disability or family member, just really educating yourself on the unknown and coming at it with compassion rather than disbelief.

Beautiful. Well I so hope that the wisdom that we share today, our listeners will walk away with a better understanding and they share it with people who can continue to serve the invisible disabled community better and to have more compassion and kindness. So I wanted to thank you both for being here, for taking time. You are so appreciated and so loved, and I'm just grateful for the lessons that you teach all of us. Thank you for being here. 

Thank you for having us.

Thank you.

So thank you everyone.

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