Dealing with the Resentment and Shame of Inheriting a Genetic Disease

In this episode, Erika discusses the deeply emotional and often unspoken realities of inheriting or living in a family with a genetic disease — specifically the resentment, shame, and identity shifts that can come with living under a diagnosis or genetic risk. Grounded in both lived experience and psychological research, this conversation explores how inherited conditions can affect not only the body, but relationships, self-perception, and emotional wellbeing.

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Transcript

Erika Tinsley 0:10

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With better help that you get the same professionalism and quality you would expect from any office therapy, but with a therapist who is custom picked for you, more scheduling flexibility, and at a more affordable price.com slash the misunderstood. That's better H E L P slash the Misunderstood. Hi everyone, welcome back to another episode of Understanding the Misunderstood. Today we're addressing a topic that's deeply emotional, often stigmatized, and rarely discussed with the nuance it deserves. We're going to be talking about the resentment and shame that can come from either inheriting a genetic disease or being in a family with a genetic disease present. Whether it's a condition that affects mobility, longevity, or mental health, inheriting a genetic risk can shift not only your body, but your sense of identity, your relationships, and your emotional world. This is also true for the risk around the potential of inheriting a genetic disease. And we're gonna be talking about that today. So we're gonna be grounding this conversation not just in lived experience with my guest who's gonna be on the next episode, but in research because this is what we do. Because understanding these emotions scientifically can really help break down some of the shame that surrounds them. Shame isn't just a feeling, it's a psychological experience that has measurable effects on mental health. And studies on people living with chronic illnesses show that illness-related shame can be linked to psychological distress and poorer social relationships. For example, research with chronic illness groups found that fear of accepting compassion from others and avoiding painful feelings fully explained why shame was related to both emotional distress and lower quality social connections. Another study comparing chronic illness groups found the greater shame and stigma were associated with higher levels of anxiety and depression, but that self-compassion and psychological flexibility helped cushion those effects. So this tells us scientifically that shame doesn't just feel bad, but it can also influence how we relate to others, how we cope with stress, etc. When we talk about resentment, this is the anger that comes not just from pain, but from perceived injustice. Research on caregivers in families facing rare inherited diseases show that feelings like anger, loss of control, powerlessness, and guilt are all common components of the emotional burden that they carry. If you're someone who's inherited a genetic disease, it's not unusual to find yourself thinking, why did this happen to me? Why my family, and why wasn't this prevented? These thoughts aren't signs of moral failure or selfishness. They're understood in the psychological literature as a natural human reaction to uncontrollable adversity. And many people in these situations also face family stigma, embarrassment, and isolation, which can amplify these negative emotions. So resentment can be a healthy response to an unfair situation, and it's natural. It becomes problematic only when it's suppressed, internalized, or turned inward as shame. Research on hereditary illness stigma shows that people with inherited conditions and their families can experience embarrassment, frustration, interpersonal distance, and social avoidance because of how others react to their condition. I want to add to this that there are so many preconceived ideas around illness that when you do open up to someone about this, they are going to have their thoughts and feelings about it as a baseline. And so that can mean assumptions and stereotypes that aren't necessarily true. So this internalized stigma and external stigma as well from other people often feed that internal shame even when the disease is outside of anyone's control. Because of course, no one chooses to experience these situations. These situations are frustrating and unjust and unfair, and that is the nature of them because no one can control them, no one can control who gets what illness, if it's inherited or not, and that is scary. A lot of the time when it's unknown whether it's going to be inherited or not, that gray area is very, very frustrating and scary for a lot of people. And you guys are going to be able to hear about a personal experience from our next guest in our second episode in this series. So, really importantly, research also points to mechanisms that reduce shame. As we talked about, psychological flexibility, so being able to hold these painful emotions without avoidance. That could be avoidance of others, avoidance of the topic, etc., but it's just avoidance of the larger situation at hand. And self-compassion, so treating yourself with the same kindness that you'd offer a friend in pain. These aren't just therapeutic buzzwords, they're measured predictors of better psychological health in people living with chronic conditions. So when we're talking about practical approaches supported by research and clinical practice that you guys can try if any of you are experiencing the situation, the first one is acknowledging the emotion without judgment. And this is an amazing point as well for pretty much any other painful experience, right? Just acknowledging emotions without judgment is naming that shame or resentment or those feelings rather than pushing it away and trying to muscle through or compartmentalize it in an unhealthy way. This gives you the psychological space to just observe it, be present with it, to not give it a name, to not give it any sort of judgment to make it feel shameful and heavy. The second one is going to be practicing self-compassion. So research shows that this softens the impact of illness-related shame, right? Being able to sit with yourself and say, you know, I feel that this is unfair and I'm allowed to feel that way. It's the self-validation, the self-regulation that really allows you to develop healthy self-compassion without making it feel shameful and hurtful. The third one is seeking social support that gets it, right? People who can understand your experience and that you can relate to and talk to. Because there are communities out there who are also going through the same thing you are. And sometimes it feels a lot less lonely if you're able to talk to people who share in your frustration and share in your pain because they get it. It's hard to talk about it sometimes with people who really don't understand your experience or don't share the same worries and and fears. So because isolation really fuels shame and resentment, connection is what decreases it. And then the fourth one is considering therapeutic tools like acceptance and commitment methods, which help people live with difficult feelings without letting them define their identity, right? Something that my therapist always likes to say is like holding space for two things being true at once. I think that that's a very powerful narrative because it's really easy to categorize something as one thing over another. But what if that thing can be two things? What if there is a gray area between something being bad and something being helpful and teaching to you, right? You can have a bad experience, but it can also be very useful in teaching you something, right? Like there can be that duality in existence when it comes to these really difficult situations, right? So if you're listening and thinking, you know, I feel ashamed because this is passed down to me, or because there's fear of it being passed down to me, or I resent that this changed my life, you're not alone. You're not wrong for feeling that way. Research shows that these emotions are part of the human response to loss, to stigma, and to lack of control, and that healing doesn't come from erasing this emotion, but from understanding it and finding healthy ways to relate to it. So before we wrap up, I want to take a few minutes to go into our typical segment, debunking some common myths that really fuel shame and silence for people living with inherited or fear of inherited conditions. The first one is that if I feel resentful, I must be ungrateful. Resentment is not the opposite of gratitude. Research shows that resentment often emerges in response to perceived injustice and lack of control, not a lack of appreciation for life or people or experiences. You can be grateful to be alive and still resent the losses or limitations that you didn't choose for yourself that are really just given to you without without any reason. So the second myth is that shame means I'm not coping well. In reality, shame is a predictable psychological response to stigma and chronic illness. Studies consistently show that shame increases when people feel isolated or judged, not when they are weak or failing. Feeling shame doesn't mean you're doing something wrong, it means you're responding to a painful experience. I also want to add that when you're responding to a painful experience, who is anyone else to judge how you respond? If you are in this unique experience where you are coping with a new diagnosis or a diagnosis in your family of a chronic illness, who's to tell you how to deal with that and how to compartmentalize that? It is all about finding healthy ways to acknowledge that this is painful, but to move forward. Not to move on, not to erase it, not to cope in unhealthy ways, but to be able to move forward from this experience, knowing that two things can be true at once. This can be deeply painful, but also something that you have no control over. The third myth is that this disease defines who I am. Research on identity and chronic illness emphasizes that illness is something you live with, not something that you are. When people are supposed to feel like they are congruent with their disease or illness, that can be really frustrating and confusing and all-encompassing of someone that they're not, right? You are not a disease. You are a person experiencing a disease. You are a person living with a disease or diagnosis. When people are supported in separating identity from diagnosis, they experience better mental health outcomes and stronger relationships. The fourth myth is that I should be able to stay positive all the time, right? This is a myth that really surrounds a lot of different conditions, a lot of different mental health experiences, and there is no evidence that forced positivity actually improves outcomes. In fact, emotional suppression is associated with increased distress. Psychological flexibility, the ability to experience difficult emotions without avoiding them, is linked to better coping and resilience strategies. The fifth myth is that talking about this will make it worse. The opposite is actually true. Research shows that naming and sharing emotions like shame and resentment reduce their intensity and improve psychological well-being. Silence is where shame loves to exist. Silence tends to strengthen shame. Connection is what weakens shame. So as a reminder, resentment doesn't make you cruel. Shame doesn't make you broken. There are signals pointing to pain that deserve care, compassion, and understanding. And I really just want to allow you guys to have that peace and sit with that peace. Thank you for listening. I'm super excited for you guys to hear our next episode in this series. We have an amazing, amazing interview with someone who has experienced living in a family with the fear of risk of inheriting a genetic disease. And the conversation we had is absolutely incredible, and I'm so excited for you guys to listen to it. Thank you for being here today and allowing space for conversations that challenge the stigma and bring us closer to honesty with ourselves and with each other. I will see you guys in the next one.