How to Tell People You Have Parkinson's: A Guide to Communicating Your Diagnosis

The moment of diagnosis is challenging, but what comes next can be just as daunting: telling your family, friends, and colleagues. In this powerful episode of Live Parkinson's - Live an Exceptional Life, we provide a compassionate and practical roadmap for navigating the conversation about Parkinson's disease. We address the emotional weight of disclosure, offer actionable scripts for different social situations, and empower you to take control of your narrative.

This isn't about revealing a weakness; it's about building a powerful support system. Tune in to learn how to communicate your diagnosis with confidence and grace, and turn a difficult moment into an opportunity for deeper connection.

In this episode, we cover:

• The emotional and psychological barriers that make disclosure so difficult.
• A tiered approach to talking about Parkinson's with your inner, middle, and outer social circles.
• Practical scripts and strategies for a planned conversation or an on-the-spot response.
• The power of sharing your story and the relief that comes with being open.
• How to gracefully handle questions like "You don't look like you have Parkinson's."

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Chapters

• 0:00 Introduction to Disclosure Challenges
• 1:40 Why Telling Others Is So Difficult
• 3:17 The Tiered Approach to Disclosure
• 6:04 Research on Disclosure Patterns
• 10:51 How to Tell Your Inner Circle
• 13:51 Handling "You Don't Look Sick" Comments
• 18:18 My Personal Disclosure Journey
• 25:30 Building Your Support Network

Transcript

Speaker 1: 0:01

Hello, welcome to Live Parkinson's. Live an Exceptional Life, the podcast whose mission it is to help people with Parkinson's lead a great quality of life. I'm your host, chris Kustenbader, and I've been living with Parkinson's for 15 years Now. Today we're talking about a topic that many of us face, and it often feels more daunting than the diagnosis itself. How do you tell people you have Parkinson's? The tremor in your hand might be a physical symptom, but that knot in your stomach when you think about that conversation well, that, my friends, is a universal struggle. You're definitely not alone in feeling this way. So let's talk about it. Let's create a game plan as a sports analogy, to help navigate these difficult conversations with confidence and grace. How, let's take a moment to acknowledge the why.

Speaker 1: 1:04

Why is it so hard for us to tell people that we have Parkinson's? Well, first of all, for many of us, it's all about the loss of control. A Parkinson's diagnosis often takes a lot of that away, and telling someone else also feels like another piece of information that you can no longer keep to yourself. Second, there's also the fear of being seen differently. We may feel we're being judged or, worse yet, pitied the natural fear we all or most of us anyway experience. Now we worry that most people will begin to define us by our disease rather than who we are as a person.

Speaker 1: 1:42

Now I want to be very clear here. There is no right or wrong timeline for disclosing that you have Parkinson's. It's a very personal choice. Some people share their news immediately with everyone they know. They post it on their social media, they tell their co workers, they get their diagnosis out there. Others might wait months, even years, and will only tell a select few of their close friends. The key is to be ready and do it on your own terms Because, remember, this is your life and your story and you get to decide how and when it's told. So let's take a step back, gather our thoughts and put together a plan of practical steps for how we want to share our diagnosis and with who we want to share our diagnosis with. So how do we even begin to decide who we want to tell and what we want to say? Because, after all, there is a level of trust involved when we're telling somebody else about our diagnosis. So if you only want a small number of family and friends to know initially, you trust that they will honor your word and not run around telling everyone else.

Speaker 1: 2:47

Now, one of the ways that you can approach telling others about your diagnosis is using a tiered approach. Think of it like this have you ever thrown a rock into the water? What happens? Well, you get a ripple effect. It starts with one small ring in the middle and then, next thing you know, as it expands, you have these bigger ripples as the ring moves farther outward. So our plan is going to be similar, and it starts with the people closest to you and then it's going to move outward.

Speaker 1: 3:16

So first we're going to start with our inner circle. Now this includes your spouse, your partner, your children and your closest friends your partner, your children and your closest friends. So these are going to be the people who likely noticed changes in your movement and maybe some other changes, before anyone else did. In fact, they may not be surprised when you tell them because they may have noticed a tremor, that you had some difficulty walking, or you had some other noticeable signs walking, or you had some other noticeable signs, but still, they need to hear it from you. They may have been worried about you and they're there to offer your support. So maybe they didn't say anything, but they noticed these changes and they're glad when you tell them that you were finally diagnosed and they're there to support you any step of the way. Now it's okay to say, hey, I'm scared because I don't know what's's going to happen and I don't have all the answers, but I need you on my team Now. Remember that by telling your inner circle, you're inviting them to be part of your Parkinson's journey, and that's a powerful thing.

Speaker 1: 4:17

Now, I'm always curious, so I wanted to see if there was any research or data about when people with Parkinson's disclose their diagnosis. Search or data about when people with Parkinson's disclose their diagnosis, and what I found was, while there isn't a single large-scale recent study that provides a statistical breakdown of when people with Parkinson's reveal their diagnosis, there were some studies and articles that had some valuable insights, and I wanted to share those with you. Now there was a 2006 study published in Neurology that surveyed 101 patients with Parkinson's, and they found that 90% disclosed early to family and friends. So this suggests that for most people, their inner circle is the first group to be told. Now, patients who delayed disclosure were more likely to be male, younger and employed more likely to be male, younger and employed. So this points to a specific demographic of people that may face different pressures or concerns regarding their professional life.

Speaker 1: 5:20

Now, the main concerns about disclosure were fear of reflecting negatively on themselves and fear of upsetting others. Now, numerous articles and patient accounts provided some insights about the timing and reasons for the disclosure. Now, one that struck me on a personal level because this happened in my case is what they call the elephant in the room. Now, a number of accounts mentioned that family members or close friends may have already suspected something was wrong before the person disclosed their diagnosis, hence identifying and verifying the elephant in the room. Now the article suggests that, at least for the inner circle, the disclosures may confirm a suspicion rather than come as a complete shock.

Speaker 1: 5:57

All right, now let's take a close look at the next ripple in our tier after the inner circle, and that group is your middle circle. Now, this would be your extended family, which might include your aunts, uncles, cousins, third cousin twice removed, just kidding on that one close co-workers and trusted neighbors. So if you don't want the whole neighborhood to know, then don't tell the neighbor who likes to run around telling everybody the latest news and gossip. Now the conversation with this group can be less detailed. It may be more casual.

Speaker 1: 6:28

Now a good little script to have ready might go something like this I want to let you know I've been diagnosed with Parkinson's. I'm doing well and I'm managing it, but you might notice some changes like tremor from time to time. This type of approach sets boundaries while, at the same time, keeping them informed. It also gives you a way to address a potential symptom like tremor before it becomes a source. This type of approach sets boundaries while at the same time, keeping them informed. It also gives you a way to address a potential symptom like tremor before it becomes a source of curiosity or gossip. Now, in my particular case, I had a sales position and when I was working, I had to do presentations in front of team members, at team meetings and for the offices that I called on. Now I used a little script like this I shared with everyone, because I had to tell them I had a tremor, because it was very noticeable and I didn't want everyone thinking I was very nervous or wasn't confident in the information I was sharing. Now, interestingly, in the neurology study that I referenced earlier found that more than 25% of people waited at least one year to disclose at work. So this highlights a significant difference in the timeline for professional versus personal disclosure.

Speaker 1: 7:31

Now also, the middle circle disclosures often happen reactively, when your symptoms become visible or questions are asked like is anything wrong or is everything okay? Anything I can help with? Now? Some of the barriers cited in the articles I read about disclosing to the middle circle included fear of stigma or pity. Now people worried that they would be treated differently or seen as less capable. And then next was uncertainty about reactions. Unlike the inner circle, middle circle people may not offer unconditional support. And then it was a desire to maintain normalcy. Many people cited that they wanted to avoid being a topic of conversation or changing social dynamics, for instance, being excluded from going to lunch together or getting invited to the after work party. Finally, and this is an important one, professional concerns. For co-workers disclosures could raise concerns or fears about job security, promotions or being perceived as a liability. Now I was very fortunate when I was working that my immediate manager, as well as the entire management group and HR, were very supportive and were there throughout the entire process to support me. My manager could relate because he had some sons with some health issues that he needed to balance when he was working. But that's not the case everywhere. So it's understandable why people may hold back on disclosing. Now, some of the factors that influence disclosure timing to the middle group included symptom visibility, and that could include whether you had tremors or gait changes. That often forced the conversation, and that was true in my case.

Speaker 1: 9:10

Emotional readiness People wait until they feel confident enough to manage others' reactions. And then next is the relationship quality. Disclosure is more likely when trust and empathy are already present. And then, finally, support needs when logistical or support needs become necessary, disclosure tends to follow. So maybe you need special assistance or arrangements at work because of your motor symptoms. Then telling the middle circle becomes necessary.

Speaker 1: 9:38

And then, finally, let's look at the last group, the outer circle. Now, this is for acquaintances, casual friends and your broader professional network. Here you don't owe everyone a full explanation. Now, for this group, a brief, clear. Your broader professional network. Here you don't owe everyone a full explanation. Now, for this group, a brief, clear statement is often enough. For example, if someone asks you about a tremor, you can simply say it's a symptom of a health condition I have, but I'm managing it well, and you can keep it as simple as that Now, remember, you're in control of all the information you share and you can give as little as you feel comfortable with, or you can give as much as you feel comfortable with, and it's okay for you to set those boundaries Now.

Speaker 1: 10:15

Before we move on to the next segment, I wanted to share two additional factors that can influence the timing of disclosing your diagnosis, and the first is your age and employment status. Younger working individuals may be more hesitant to disclose due to fears about job security or professional stigma. And secondly, social support. The desire for support from friends and family is a major motivator for early disclosure of your diagnosis Now, on the other hand, the fear of losing that support or being pitied can cause a person to delay telling anyone. All right, now let's switch gears and talk about the most actionable part of our discussion. Let's focus now on the how to tell people that you've been diagnosed with Parkinson's, and let's start with our inner circle Now.

Speaker 1: 11:00

I recommend the prepared approach Now. This isn't a conversation you want to have on the fly. I recommend scheduling some time to talk so your family and close friends aren't distracted by other things and so that they fully comprehend what you've just told them. So you want to find a quiet, comfortable place where you won't be interrupted by the phone calls and text. Now here's an example you can use to break the ice. So start off by saying I have something important to share with you. Now be prepared for an emotional reaction from them and from yourself. Now it's okay, even if they say men, don't cry. It's okay to feel overwhelmed. Having some information resources on hand, like a link to one of the Parkinson's foundations, like the Michael J Fox Foundation, the Davis Phinney Foundation and the Parkinson's Foundation, to give them where they can go and get some information on themselves, is a great way for them to learn and understand about the journey that you're on and then also that they can help you live well with your Parkinson's. So this way, if they want to get more information about Parkinson's after your meeting, they have some trusted resources to go to.

Speaker 1: 12:09

So let's move on now to the middle and outer circle questions. Now for those, we need an on-the-fly approach. This is for when someone asks you a direct question like why is your hand shaking? So the best strategy here is a simple, confident statement like I have Parkinson's, but it's nothing to worry about. I'm doing great.

Speaker 1: 12:29

Now, one of my friends was an air traffic controller for almost 30 years Now, towards the end of his career and before he was diagnosed, his hand would shake and he couldn't figure out why. Then one day one of his co-workers asked him why are you so nervous? Why is your hand shaking? After all, you're great at what you do and you've been doing this for so long. His response was I don't know. And then shortly thereafter he was diagnosed with Parkinson's and put on medication to control his motor symptoms. And then, because he was on Parkinson's medication, he had to retire due to the regulations. Now he said his co-workers understood then that it wasn't nervousness but trauma from Parkinson's.

Speaker 1: 13:11

Now the reason I wanted to share this is because sometimes the symptoms you experience give signs to others that you have something going on, and that makes the discussions easier. So when you give a short, confident answer to their questions, this immediately takes the power away from their questions and puts it back into your hands. Now you're not making an excuse. You're simply stating a fact with confidence. Now let's address one that most all of us have heard, and it's a crucial one addressing the what can I do question. Now, people want to help and they often don't know how, be ready with an answer. It could be something as simple as you know just continue to be my friend, or I'd love it if we could go for a walk once or twice a week. This gives them a clear, actionable way to support you without creating more work or stress for you, and it's a great opportunity to shape your support system.

Speaker 1: 14:06

Now I wanted to address probably the most common statement I get, and I've heard others with Parkinson's get the same question. So it's almost like a rite of passage, and that is well. You don't look like you have Parkinson's. Now, when you get this statement, your response depends entirely on your personality, your mood and your relationship with the person making the statement. Now, I always like to keep a positive attitude and I like to joke around and kid, so I might respond with something like well, I guess there goes my shot at being the national Parkinson's spokesmodel. But let's give you some specific ways to address this and I'll break it down into categories Now.

Speaker 1: 14:44

The first is the simple, direct and educational approach. Now, this is a great option for middle circle people, acquaintances, who are generally curious but uninformed. It educates them without getting into a long emotional conversation. So here's some of the responses that you can consider. That's because many of my symptoms are invisible. Parkinson's is more than just a tremor and it affects my balance, my sleep and energy levels. Next, you could say thank you. That's a nice thing to hear. The truth is, I work really hard with medication, exercise and therapy to keep my symptoms from progressing, and then finally try. Parkinson's is different for everyone. Just because my symptoms aren't as visible today doesn't mean they aren't there. Now, here's why these work. It helps clarify the misconception that Parkinson's is only about visible tremors, and it also sets boundaries by not inviting follow-up questions about your health history.

Speaker 1: 15:40

The second approach is my favorite because it fits my personality, and that's the humorous, lighthearted approach. Now, if you're in a good mood and you want to keep the conversation light, a humorous response can be a great way to handle it with this type of situation. Now, this works best with people you know well enough to share a laugh with, so try these for those occasions. Oh, you should see me on a bad day, or well, I'm trying to define what Parkinson's looks like, and my doctor thinks so, so I'll pass along your professional opinion. Now here's why a lighthearted approach works.

Speaker 1: 16:16

Humor can be a powerful tool for diffusing awkwardness and taking the sting out of a potentially offensive comment. It shows you're in control and not taking the comment personally. And then next is the graceful and curt approach. So for outer circle people and anyone who makes you feel uncomfortable, you can keep it short and sweet. You don't owe anyone a detailed explanation. So try using thank you, followed by a quick change of subject or. I appreciate that and looks can be deceiving.

Speaker 1: 16:52

Now why this works. It's polite but firm. It acknowledges that they're comments without validating the underlying assumption, and it also signals that you're not open to further discussion on the topic. Now, finally, the I'm offended approach. Sometimes the comments can feel deeply invalidating, as if your daily struggles are being minimized. So if you feel offended, it's okay to address that directly, especially if the person is a friend and you want to educate them. So try these responses. I know you mean that as a compliment, but it actually discounts all the work that I do every day to manage my symptoms.

Speaker 1: 17:28

Parkinson's is a full-time job, or A comment is a little tough for me to hear, because there is so much more to this disease than what you can see. Now why this works. Now this is a more vulnerable approach and it can be incredibly effective at educating a friend and strengthening your relationship. It tells them how their words impact you, which can lead to more mindful conversations in the future. Now remember these approaches are just your toolbox. Now remember, these approaches are just your toolbox. There's no right way to respond, and the best response is the one that makes you feel the most empowered and comfortable in that particular moment. Now, also keep in mind that the person making the comment is usually not malicious, but simply uninformed about the hidden symptoms of Parkinson's. All right, now we've covered the what, when and how, but it also helps to hear from someone else who has walked this path. So I want to share with you my own personal Parkinson's disclosure journey. Now I want to give you a little background to help set it up.

Speaker 1: 18:26

And so before my diagnosis, I was experiencing tremor or shaking on my left hand. That's really what started me on my journey to find a doctor to figure out what was wrong. Now, initially, I was on vacation with my wife at Deep Creek Lake in Western Maryland. Now my wife and I had got back from a walk and she decided to run to the store to pick up a few things. So my teenage kids were along and we were hanging out and then all of a sudden my left hand started shaking and I couldn't get it to stop. So my kids called my wife in a panic and said dad's hand is shaking, something's wrong. So my wife came home and said we're going to the emergency room. I said I'm not going to the emergency room, I'm fine. So after a few back and forth I'm sitting in the emergency room and the doctor comes in and examines me and said well, I can't find anything wrong, so it's probably stress. So I'm thinking to myself stress, I'm on vacation. But I thanked the doctor and went back and my hand stopped shaking a little while later. And then when I returned home I made an appointment with the neurologist because my hand was still shaking and he ran a number of tests over the course of a couple weeks and during that time I also started dragging my left leg when I walked. And after the series of tests he finally said I believe you have Parkinson's. And then he recommended I go to the University of Maryland Neurology to see a movement disorder specialist, because he said Parkinson's wasn't his specialty. And he went to University of Maryland Medical School and said they had a great program and said that I really think that you should get down there just to confirm the diagnosis, which I did. And they confirmed my diagnosis. So I wanted to give you that quick overview so it gives you a better understanding of how I approach telling each tier level.

Speaker 1: 20:15

And let's start with my inner circle of family and close friends. So we went home and told my kids and they said I figured you had something, because they saw my physical symptoms on a daily basis. And they asked me some questions like are you going to die or how long does it take to get really bad? You know those type of questions. So I answered their questions and they felt more comfortable. And then I told my parents and my brother and his family and again they said they weren't surprised because they also saw the physical symptoms.

Speaker 1: 20:46

I would go to our cabin in the mountains with my brother and his family and and my hand would be shaken and he'd always say would you stop shaking your hand? It's driving me crazy. And I'd say, well, I'm trying. And then they both said you know, we'll support you in whatever way you need. And then my best friend Scott and his wife Lisa. We went to lunch with Mary and myself and we told them and he said I knew something was wrong, but he wasn't real familiar with Parkinson's. So I filled him in on what Parkinson's was and how it progresses. He said hey, whatever help you need, we're there for you. I mean, we've been friends for 50 years and that was great to hear. So it was great knowing that I had all the support I needed from my inner circle.

Speaker 1: 21:31

Now the next step was to tell the middle circle no-transcript. Look, I'll do whatever's needed to be done in order to help you. You know, continue to work for as long as you can. Now he understood because, as I mentioned earlier, he has two special needs children at home that need a care.

Speaker 1: 22:15

Now you may be thinking didn't your manager notice your tremor? Well, actually no, because he lives three hours away from me and we'd get together on ride-alongs when he wanted to do a ride-along in my particular territory. So we didn't see each other on a daily basis. But when we finally got together, that's when I disclosed my diagnosis. When we finally got together, that's when I disclosed my diagnosis and then, after a few weeks, my manager and I told my manager and his manager. And then we had a team meeting up in Boston and it was a three-day meeting then so my teammates could notice that I had some tremor and that I was still controlling it with medication.

Speaker 1: 22:53

So during a dinner meeting that we had one night, people were inquisitive and I said look, I have Parkinson's, I'm doing well. And I noticed that most of you probably noticed that my hand was shaking. I said I'm doing fine and I'm going to continue to work as long as I could. And they were all very supportive. They would check in on me weekly to see how I was doing. And then finally, the outer circle. So by the time I told my inner and my middle circle people I was very confident and I really didn't have any problem telling someone I had Parkinson's. You know, I could be presenting at a lunch and learn, and the office staff could see my hands shaking and really to break the ice, I'd start up by saying no, I'm not nervous, I have Parkinson's. And then they would ask me some questions and ask me how I was doing and they were very supportive as well and ask if there was anything they can do. So in my personal case, I found that when I was talking to all three circles that everyone was very supportive and willing to help me if I needed it. They all showed genuine concern.

Speaker 1: 23:54

Now I found that when I'm open and upfront about my Parkinson's journey with people, it really helps take away the thoughts that they may be having like what's wrong with that guy? He must be really nervous, or why is he walking funny like that? There's got to be something wrong with him. So when I'm proactive, it really helps break the tension that people may feel. Now that's my personal story of how I told each group you have to do what's best for you on your own Parkinson's journey and decide who and when you're going to tell others about your diagnosis. Now for me to this day now I have no problem when I notice somebody maybe staring, when I'm out in public or if I do a lot of presentations and I teach a couple classes. So people may ask and I'll just I'm up front and tell them look, I have Parkinson's and I'm doing well with medication and exercise. So thank you for your concern and I'll be happy to answer any questions that you may have.

Speaker 1: 24:52

So telling someone you have Parkinson's really isn't about pity, it's it's an invitation. It's an invitation for them to be part of your life and an invitation to a deeper connection with your family and friends. I'll remember you're the story, not the disease. The script, the timing, the details all of it's up to you. You're not just disclosing a diagnosis. You're building a network of support that's going to help you live an exceptional life.

Speaker 1: 25:21

So my challenge to you this week is to think about one person that you want to have a conversation with. Rehearse those words that we talked about. Take that step, and you might be surprised by the love and outpouring that you're going to receive from people. I know that I did so. Hopefully, this helped you as a way to break the ice and disclose your Parkinson's diagnosis and your Parkinson's journey with your inner circle, your middle circle and, eventually, your outer circle.

Speaker 1: 25:51

Now, I know it takes time and, again, this is a personal choice. You decide when and where you're going to tell people. Now, please visit my website, liveparkinsonscom and subscribe to the free monthly newsletter, and there's also a bunch of other free resources on there, like my nine balance exercises to help you improve your balance with Parkinson's, and then there's also a free medication and symptom tracker, and there's a number of articles that, hopefully, can provide some information about Parkinson's as well. Now, if you feel that the content I provide is valuable, please consider supporting the program at ko-ficom slash liveparkinsons. Again, thank you very much for listening. Again thank you very much for listening and remember stay healthy, stay strong and live your best life with Parkinson's. Thanks again, have a great week and I hope to see you soon.