Living Well With Invisible Illness Through Compassion with Simone Giangiordano

In this episode of Beyond My Diagnosis, Michele welcomes back Simone Giangiordano, Compassion Based Business and Lifestyle Coach and Certified Compassion Cultivation Training instructor, for a deeper conversation on living well with chronic and invisible illness.

When Simone first joined the show, she and Michele explored curiosity, acceptance, and learning to work with the body instead of fighting it. That conversation centered on how invisible illness reshapes identity, work, and self trust.

This episode builds on that foundation and goes further.

Together, Michele and Simone explore self compassion as a daily practice rather than a mindset slogan. They discuss how compassion influences decision making, boundaries, work, relationships, and quality of life when living with chronic illness. The conversation focuses on honoring limitations without being defined by them and letting go of outcomes in order to create space for resilience, creativity, and meaning.

In this episode, we discuss:
• Why self compassion is essential for invisible illness
• How curiosity replaces self criticism
• Letting go of outcomes to improve quality of life
• Navigating work and career transitions with chronic illness
• Asking for help without losing independence
• The difference between compassion and pity
• Building supportive healthcare partnerships
• Reframing limitations into possibility
• Why illness does not define worth or potential

This episode offers grounded insight and lived wisdom for anyone navigating chronic illness, invisible conditions, or major life transitions.

Simone Giangiordano is a Compassion Based Business and Lifestyle Coach who works with individuals navigating health challenges to build meaningful lives and businesses that support their wellbeing.

She is the creator of the BalanceUP® Community and her signature program The Power of I Can’t®, which helps people find creative solutions around health limitations so they can transform their lives, work, and sense of possibility.

Simone transitioned from a nearly two decade corporate career into entrepreneurship as a direct result of her own health challenges. With more than 18 years of entrepreneurial experience, she brings both professional expertise and lived experience to her work.

She is a Certified Compassion Cultivation Training instructor through The Compassion Institute, with training rooted in neuroscience, psychology, contemplative practice, and clinical medicine. Her work emphasizes self awareness, values alignment, and compassionate decision making as tools for long term wellbeing.

About Simone:
Simone Giangiordano is a CCT Certified Instructor, chronic illness advocate, and the founder of the BalanceUP® Community. She teaches individuals how to build meaningful, sustainable lives and businesses that honor their health. Her signature program, The Power of I Can’t®, empowers people to find creative pathways around health limitations so they can flourish.

Simone’s Links:
🌐 Website: https://www.simoneg.net

📄 Full Bio: https://drive.google.com/file/d/1Ck56wNRTAbFgjzVWdaLzzaVXDJ4OMMwj/view

Transcript

0:00

(Music) Hello, this is Michelle Weston with Beyond My Diagnosis, a podcast about living with a chronic condition, a chronic illness, whether it's diabetes, rheumatoid arthritis, MS for me, doesn't matter. There's also the category which I'm always fascinated with is invisible illnesses. You can't see it, but the person has it, and it's still very real cuz they're living in it. I asked one of my favorite people, and I actually just did a compassion workshop with her for a number of weeks. And even though I've studied compassion and getting my masters, you never cannot learn more. And both of us are from that school. So I was grateful to not learning more about compassion and compassion for oneself and for others from that. Because I wasn't getting a grade anymore, so yay. It was a different experience, which was a good thing. I have Simone, she's Simone Giordano with me today, and she's down in Florida. And hello, Simone. Hi, Michelle, it's always a pleasure. It's always. This thing, of course, I always pronounce your last name incorrectly. Say it for the listeners because I always get it wrong, but you've been using it for longer than I have. Absolutely, Simone Giordano. Okay, thank you, Simone Giordano. Very nice. Or me, or Simone G. Simone G. works too, that's your handle, so I do that. Simone has had a journey with her own chronic illness, and I asked her on today because both of us many a time are dealing with it from a position of invisible. If you met me, you wouldn't think I had anything going on. You may, after like two or three o'clock in the afternoon, see me. You'll see it as a limp because I have dropped foot in my right leg. But I don't really see it unless it's really bothering me. My leg is bothering me. But it's 25 years, so anything I can override and ignore in regards to symptoms, I try and do. Right, Simone? I mean, you just have to keep going. So what do you think is the most important thing considering using self-compassion for people to think about with a chronic illness? Yeah, I'm gonna play off what you mentioned about you're always learning. So even though you have taken programs and so forth, doing this without a grade, you are able to learn. And right there, that incorporates curiosity. So I think there's several things that kinda come together when we approach life from that perspective, that there's always more to learn and to approach it with curiosity and openness. Is then we can recognize the gift of self-awareness. And I think it's really important to be self-aware. It's not being overly critical and overly crazy in self-awareness. It's not like being caught in a mirror all the time of what's wrong with me, what do I have to fix? It's about accepting that you may be in a different body than you were. I became ill and was diagnosed in my early 30s. So it's different for me because when Simone and I talked, she found the first symptoms of her walk with a chronic condition at 10. So talk about at 10 what that looked like and why suddenly, what was noted by your parents or by your teachers that they sort of said, wait, I think you're having something going on. Yeah, so I'll say at 10 years old, I started having symptoms, but I didn't have any diagnoses for, oh gosh, probably almost eight to 10 years, minimal, and then probably another 10 from there till they really started coming in. So, but I did have teachers contact my parents that, hey, she has a lot of pain here and she never complained. She's always pleasurable, she never complains and she's not complaining, but you can tell she's hurting. I started having a lot of joint pain at that time too. Then there is also just because of the types of conditions that have built up over time, I was having allergic reaction to the sun. So that meant at times not being able to go out to recess. Wow. But even then, it wasn't upsetting to me. Rather, I used the opportunity I love to read. So on those days I couldn't go out, I'd be in there reading. So it was again, I was already starting to address, well, what can I do? Instead of what can't I do? Yeah, I wasn't out there, which is ironic that now I have the program, the power of I can't. But anyhow, yeah, which is ultimately so you can. But already it was like, I just accepted. I was able to be in a place to just accept it and focus on what I could do and it didn't impact friendships or anything at that point in my life. I think young kids, it wasn't a big deal. They're out, they come back in and you just continue on your day. So I think that concept of that acceptance and having a father who had a lot of chronic health issues, a lot of very serious and seeing how he handled that. Did they have anything to do with those correlations with things that were going on with him that were going on with you or no? No, no. He had a heart attack at 41, major heart surgery before it was available in many places. So he was put under, only there was hardly anybody in the States that did it at that time. Cancer and so forth. But he never complained about it. And as a result, I always saw the wholeness in him, the human dignity that it, that was just one aspect of his life. So how do we support him? How do we work through this challenge? It wasn't a problem to be dealt with. It was my father to work with and support versus a problem or challenge to be dealt with. So there's a totally different mentality behind that, even the sense of the words, right? I have to deal with that or, hey, how can I support my father? So when you start to turn out on yourself that, hey, maybe this illness, this new diagnosis isn't such a problem to be dealt with, but to honor, how do I honor myself as a whole person the best I can? Then we can start to find that. So it's observing that self-awareness without judgment, which is part of loving kindness to our self, self-compassion without judgment. And then we can see our true reality and not deny it. And that puts us in the position to use our energy to find solutions, to find workarounds, to be real with ourselves. What kind of modification do I need to make to live my best, to do my best right now? Yeah. And it does. It makes a difference when we decide to have more patience with ourselves. And I was talking to you before we started because she and I were deciding what we wanted to talk about because Simone and I could talk for hours and on many things because we both coach people and we coach people in health and wellness. And I was talking to her just to a sidebar because I think it's important about working with somebody on job interviewing. And what's interesting about job interviewing is that what if you have an ISM? What if you have something that you do when you interview, like touch your nose all the time? Or everyone has it. When I speak or when I'm presenting a story when I was an editor, I always, excuse me, look up to the sky because I want white space. But it used to make my publishers, the owners of the magazine, crazy for one of the magazines I work with because I'm like, "Why are you looking at there?" It's like, "Because I need white space. I can't look at you because you're in the way for me to see what the layout looks like." And it made them crazy. And Simone and I were just talking about the best tool that she has, which is, I'm jealous, is the best way to go into a job interview is you have the job already. And to not ever go,"I'm not right for this. I don't have the tools for this." No, it's an opportunity to learn. And if you don't know something, right, Simone? Yeah. What could happen, right? Tell them about the time that you were in Pennsylvania. And it was like Christmas time and people were like, "What the hell? You're looking for a job during Christmas?" Yeah. I was moving back from Columbus, Ohio to Pittsburgh, Pennsylvania at the time. And I had been wanting to do so for some time. And I'm going to add to the story because it kind of comes into play. I had a resignation letter all typed up the year before. And I went back to visit and I was in Pennsylvania, I was visiting a friend and I fell and I knew I had really hurt myself. So I got myself back to Columbus on a Sunday night. I tore up my resignation, got myself into the doctor and ended up having two surgeries. Oh, man. Oh, man, man, man. And that move back got delayed a year with two knee surgeries. Wow. So there were a lot of good things that came. It helped with a lot of long-term issues. So I was able to have significantly less pain on a daily basis as a result. So, yeah, sometimes I was really like,"Oh my gosh, your life just flipped upside down." I had just sold a brand new home to do this. So I had to find somewhere. I took that half a day off, found a place to live with two dogs and move into because I had just sold my home and everything. So yeah. But you have to have that face, that compassion, that self, the place where you know, if I don't know everything about this type of job, I'm willing and present to learn. No, you wouldn't choose to be an astronaut if you weren't trained to be an astronaut. We're not talking about those kind of things. We're talking about there are many skills that you could learn on the job, right? Absolutely. So fast forward a year, and this is what I had shared with you, is I was ready to move back to Pittsburgh now. I could walk pretty well and all that. So it was Christmas time and I was in the baking industry and it was like a recession and I had everybody tell me, why would you job hunt now? Why would you move back without a job? Why would you do that? And I was like, so it was Christmas time. So I was like, oh good, if nobody's looking, it'll be easy to get a job. So I had an interview with PNC bank and then I had it with a major investment firm and I got both jobs that same day, one in the morning, one in the afternoon. So I got to choose. Which is always the best situation. So yeah, yeah, absolutely. So when I was talking with Michelle, I always actually loved interviewing because I looked at it as an opportunity to have a good conversation with... I just kind of thought of them as my employer because why would I be having the interview if I didn't want to work there? And just from the perspective of, hey, when I'm doing this role in this kind of situation, what would I do? So I just kind of talked from the perspective. I was putting myself in the situation of imagining myself in the job already. So the way I talked, it wasn't coming from a place of cockiness that, oh, I have this job, but rather a place of deep curiosity. So okay, what skills will I need to expand? Just really asking questions relative to the jobs. What kind of training will you be able to add to help me? And I always... So it was just really imagining myself in there to make sure it was a great fit and what I wanted and also that I had something, the right skills to contribute. And I always ended the question, the interview with the question, is there any reason you wouldn't hire me? And again, it wasn't from a place of cockiness, it was a place of... Or arrogance, it was a place of, hey, is there something I left unsaid? Is there something important I don't know about? Or if you have reserves, what are they? And because constructive criticism could help me for another interview or another role or to know where I needed to build skills. Or just, oh gosh, yes, I can... Depending on their answer, usually it was, no, we're good. But if they had something, I had the opportunity to address that. So it's really looking at it from this learning perspective and then letting go of the outcome. Moving on with your life. It's really hard. It's the same thing living with a chronic condition. Letting go of the outcome is really important because many of us with chronic illnesses, and sometimes it's more than one, have to want to, need to understand that you have to let go that... I'm going to use an S because it's easiest for me to go there. We don't have a cause of MS yet. They're working on it. It's hundreds of years, but especially in this decade, in these past like four or five decades. So you can't get to a cure. If you don't have cause, you can't find a cure. But they've learned things like disease modifying therapies and integrative tools like I do Pilates because it gives me core strength and it helps with balance. Those are the things that as the patient, we can do for ourselves and therefore have a better quality of life. If we always are poor me, poor me, life is going to be really frigging long. Yeah. Yeah. So when we can use our skills of introspection to understand ourselves, and these are those kind of things that are simple, but not easy. Nope. Not easy. Never easy, but okay. Yeah. So I think this introspection of what are my true limitations, but what are my core values? What are my strengths as well? And then like, okay, here's where I'm at with life. Maybe it's with a business. Maybe it's with work. Maybe it's with friends because it's facing those all aspects of life get impacted when one or more of these kinds of illnesses come about. Relationships with partners, parents, everybody. So what is it that I'm missing? What's not fulfilling in my life? While also honoring that we're still whole. I think this is like holding a paradox. I'm missing this in my life to feel really fulfilled right now or to potentially, but I also know that I'm whole. So honoring our own human dignity at the same time, this paradox of I want to be here, but when I say want to be here as being realistic, like you started out talking about exploring new jobs and learning, but within the realm of reality. So for me to go and say I was going to run a marathon would have been not realistic, but I did walk one 11 months after two knee surgeries. There's no real what's realistic. So when we understand, Hey, in my social life, this is what's missing. This is where I would be more fulfilled. Maybe it's maybe not recognizing the gaps just to be more fulfilled to bring about our very best so that we can contribute the most that we have. Because I do believe the more we're able to balance all areas of our wellbeing, the emotional, the physical. So not overly focusing on the physical, but how looking at that impact of the physical invisible illness aspects to the social, the spiritual, our work and finding those gaps then honoring those. What are the priorities that would make the biggest shift? What is it a lifestyle change? Is it finding building a new dream team or adding a new resource? Like you mentioned Pilates. I started working again with my one of my Pilates and structure structures from Pittsburgh when I was there over the summer and now I'm doing virtually because she knows me. She knows how slow we have to go for the injuries to not hurt myself. We're talking isometric. And that's important. So finding someone that you can work with that is a good partner is also important. You need partners. When you're dealing with a chronic condition, you need partners. You need people that surround you that understand that, yeah, we have to go slower. Even my husband, my husband has learned over the eight years that we've known each other, the four and a half years we're married, there are days and there are times where I walk faster and there are times where I cannot keep up with him and you have to slow down. And I appreciate that sometimes he's sometimes over careful with me. Like when you're near the edge of a sidewalk or something like that, if he knows that I'm tired, because I hate, depending on anyone to do anything, I'd rather just be like, I'm going to do it myself. But the point of that is, is that you learn that it's okay to lean on someone, especially a partner, but it could be a friend. It could be a relative. It depends on who that is. But let people help you and accept it in a way that they can feel your compassion and then because they already have compassion for you and those around you that don't have a compassion for you or understanding, you know, I mean, I'm sure Simone, I dislike, but people do it because people are humans. I hate it when people, when I say I have MS and people say, oh, I'm so sorry. Why? You didn't give me a mess. What do you have to do with my diagnosis? Nothing. I don't even have to do with my diagnosis. My body had a virus in it. I did not handle stress well, so I do have something to do with it. And so it kicked off a firestorm. Okay. So I learned something very important. I did not take care of myself as well as I should have, but I also don't berate myself because having this chronic illness has led me to a different career. And now I work with people as a health and wellness coach and patient advocate to help them advocate for their best selves or their best lives. And if they're in the healthcare arena, it's interesting. You know, it's interesting and you have to have a lot of compassion around that. You have to have the compassion not just for yourself, but also for the team that's helping you. We know that healthcare today is overworked and it's crazy and it's about money, which it should never be about. It should only be about helping people be well, but that can happen. And so how are we going to be within that situation? So having compassion, even having to wait for a doctor. Yes, sometimes the doctor is behind. Maybe they had a case come in. I mean, I'll never forget it. When I saw my eye surgeon for my optic neuritis, one day I hadn't put it. It had been like, it took me four months to get the appointment and I was looking forward to seeing him and see how it was testing and see how my eyes were. And I got a call from eight o'clock in the morning from his medical secretary and she said, "Michelle, I have to cancel the appointment." I was upset. I was mad and upset. And then I sort of had to take a backtrack, but I still had this tone in my voice. I said, "Well, what happened?" After four months, somebody went blind. Did you just hear what I said? And I heard her say that. I thought, "Oh my gosh. Yeah, he had a cancer that appointment. I hope he treats me the same way if something like that happened to me." What kind of compassion did this man have and have to say, "I have to make a choice. I need to concentrate on this person right now who has had this happen and I'm asking you to have compassion as another patient to step back and we will fit you in. I promise." Yeah. Yeah. It's, they're so, wow. That's challenging. And there's, yeah, when we're putting together our own care, recognizing our needs, also, I'm going to come back to that. You had mentioned about when someone finds out you have MS and they're like, "Oh, I'm sorry." That right there is not acting in compassion. We can do that because we're unskilled. Yes. And also people say that because they don't know what to say. Exactly. Right? Exactly. They don't know what to say. And you're just like, our brains go,"Then don't say anything, God damn it. Just don't say anything." But people try to figure out what they should say. And you're like, "No." So everybody with invisible illness is going to run into these two situations you just outlined. The frustration with doctors and doctor's offices and these kinds of statements towards our illnesses. So how can we prepare for that? So knowing that there will be people who are genuinely recognizing, they're genuinely trying their best and saying,"Oh, I'm sorry," because recognizing that, "Hey, it hurts to hear that sometimes." Or like, "Well, hey, well, at least it's not this." That comparison is really hard to take sometimes. But if we understand it on our own illness and on our own wholeness, our own person, understanding that maybe we've done that to other people in the past without knowing it before we had a certain condition or had a certain loss in our life where we grieved and now realize, "Oh my gosh, I said something like that before. I thought I was being compassionate, but I know what it feels like now." Being that person is trying to, in an unskilled way, share compassion. So if you can understand that from a compassionate perspective, you're being self-compassionate to yourself because you're not adding another layer of suffering like, "I can't believe they sent it out to me. How dare them?" And it just makes, we're using our energy and it's hard not to. It's very easy. And on that note, we are always a work in progress. Yes. And we can always learn and we can always choose to shift and develop new tools and new strategies and new skills. And that's why I'm doing Beyond My Diagnosis. I think it's really important to talk about these things with experts, with patients, and the two of us wear both hats, so it becomes a little more interesting. And no, you don't always have to know what the condition is. I talk about MS. I talk about bariatric. Simone may not want to get in, or George may not want to get in, or Jill may not want to get into what exactly their diagnosis is or diagnoses are. That's not the important part of Beyond My Diagnosis. What's important about your diagnosis is looking beyond and looking forward and saying, "What can I do to live my best life, to be compassionate to myself, to be compassionate and kind and patient with others and myself?" And I hope that in listening to this podcast, you have a chance to think about what Simone and I have been talking about. And on that note, we'll come around because Simone is one of my favorite people to talk about this. Simone, what is your website if people want to reach out to you, especially about the Compassionate Program? It's for everyone. It's not just for people who are coaches and so forth. It's for everyone. Yes, it is. My website is cimon, G, as in George, .net, N-E-T. And there's a tab on there for the compassion training where you can learn a lot more about it. It's out of the Compassion Institute. The program is developed out of Stanford University with their CCARE unit. And so it's based on evidence based on neuroscience, psychology, contemplative practices and clinical medicine. So it's a program that's good for, like you said, anybody. I think how it helps a lot with individuals who have chronic illness or invisible illness is helping us really work to align with our values, our true needs, what are our aspirations in life for happiness, learning and learning to work. Because that gives us information to base decisions on for what kind of work is right for me now. What kind of friendships are right for me now? What do I need in my life to align with this, what my aspirations and maybe an opportunity to recalibrate our aspirations and desires, which so few of us do. So I really believe that chronic illness is fun. No, never. We can use it to know ourselves better and can still, I have 20 plus diagnoses. That's what, you know, she's not going to get into all that. My sister is the same. My sister is the same, Simone. She has numerous things. The point is, is that... Doesn't define us. No, it doesn't define us and you can't always see it. So what we'd like you to do is be patient and kind and compassionate to yourself and to others. And that will be the gift of living beyond my diagnoses. We'll see you next week. And I wish everyone a great day and someone I'll see on the other side. Thank you. Thank you. Thanks for tuning in to this episode of Beyond the Diagnosis. If something we talked about today resonated with you, if you're craving deeper understanding, better support, we just want to know you're not alone on this journey. Make sure to subscribe to my free substack at michelleweston.substack.com. That's where I share personal information. Personal insights, expert takeaways, and extra resources to help you stay informed, empowered and one step closer to the clarity you deserve. And if you found this episode helpful, leave a review or share it with someone who needs to hear it. Your voice helps this message go further. Until next time, keep asking questions, keep trusting yourself and keep going beyond the diagnosis.