EPISODE 28: Anger and Sadness-Emotional Validation

STACY: Hi everyone, and welcome back to Autoimmune Adventures. Today we're discussing a deeply personal and often challenging topic. Handling anger and sadness while we're living with autoimmune disease. These emotions can be really overwhelming, but they're also completely natural, so we wanted to address them.

But first, let's talk about our Good Bit Minute. Let's talk about the science of smiles, which is a little counterintuitive given that we're talking about negative emotions, but I think it's important for us to realize there are certain simple things that we can do that will help us feel better.

If we're feeling overwhelmed by sadness or anger, there's always something that is simple, but very powerful. You can try right now. Just smile. Even if you're not feeling that emotion, smile. Just the act of smiling can shift your mood. Research supports this fascinating connection between facial expressions and your emotions. Psychologists call it facial feedback hypothesis, and basically that suggests that your facial expression can influence your emotional state.

In 1988 study by Strack, Martin, and Stepper, it demonstrated this beautifully. Participants were asked to hold a pen in their mouth. In ways that either mimics smiling or inhibited it, and those in the smiling group rated cartoons as significantly funnier than those who couldn't smile, showing how even a forced smile can alter your mood. And most recently, a 2019 meta analysis published in Nature Human Behavior confirmed this phenomenon by analyzing over 50 studies involving nearly 11,000 participants. The results showed consistent evidence that smiling can indeed make you feel happier thanks to the brain's release of neurotransmitters like dopamine and serotonin. These chemicals are known to reduce stress, improve mood and even alleviate mild pain. So smiling can benefit your relationships.

Here's another quick challenge that you could think about - if you're thinking of something that makes you smile, like a funny memory or cute animal or even your favorite song, take a deep breath, smile and notice the shift that it gives you. It's small, but it can be a really powerful step toward feeling better. So the next time life gets tough, remember, a smile is free. It's easy, and it's powerful.

BECKY: Shifting gears a little bit, living with a chronic illness can feel like an emotional roller coaster. And I think all of us have experienced that. Anger and sadness are two of the most common emotions that people in the autoimmune community experience. And we hope that's not all you're experiencing. We definitely hope you're getting some joy and some peace in there as well, but we recognize that it can be frustrating on a day to day basis, so we're all going to be dealing with that anger and sadness.

We need to recognize that they're not just emotions, they're also signals that something in our life needs attention and care.

ALYSIA: Right! It is important that we acknowledge that those feelings are there instead of suppressing them, because when we ignore them, or we bottle them up, that can often make things worse physically and mentally for us.

So processing those emotions in a healthy way really helps you improve your overall well-being, and it can help you manage your autoimmune symptoms. So we're going to talk about the roots of these emotions and share some coping strategies, and discuss how to just build resilience over time.

STACY: I think the first thing we have to do is to start by unpacking anger, because it's a common, but misunderstood, emotion in people who live with autoimmune disease. It's something that all of us experience, and sometimes we can't even explain why we're angry. Sometimes we don't have a finger on the reason why we're so upset or so angry. Whether we're angry with ourselves, angry with someone else. whether we have a valid reason for our anger. Sometimes I feel like, "I'm just going crazy. Why am I so pissed at everybody?" We have to figure out what's behind it.

BECKY: Yeah. Anger is a secondary emotion. We have to kind of recognize that, right? We have to recognize that in some ways it is a secondary emotion, because what are we feeling first? Sometimes if we get embarrassed, we feel angry. Sometimes if somebody is annoying us, we're feeling annoyed and that becomes anger.

I think very commonly for those of us that have. chronic illnesses. The anger often stems from frustration. We have frustration because our physical abilities are limited, our plans get disrupted, and we are forced to change our life and adjust it in ways that we had maybe never expected to. So imagine preparing for something so important only to have a flare up to make it impossible to follow through on that can be incredibly frustrating.

I had that happen to me a couple of years ago, but I live on a farm. We had been breeding and raising angora rabbits at the time, and there was a big fiber festival down near San Antonio, and I was asked to be the speaker specifically. on Angora rabbits, and to demonstrate how to take care of them, the benefits of them, how you can humanely and safely harvest their wool.

And I had made myself a PowerPoint. I was excited. I was, you know, ready to go down and have a good time with everybody. About two days before I was supposed to go down, I had one of the worst lupus flares that I have had in years. I had a really, really bad flare and I could hardly even move my joints. I had friends that were going to be there that I hadn't seen in a while. I had friends that I had made online through the fiber community that I was going to be meeting for the first time. I had been so looking forward to this, and my husband and I had even planned it out.

And he had to be the one to point out to me and he just had to say, "Babe. I know you want to do this so badly, but no way you can do a four hour car ride. You're struggling to go to the restroom here."

He had to bring me back to reality. And I remember that was the first time I had made a really big plan - because I think we've all had little plans that we make, like little plans that get foiled; maybe we're going to go out to dinner one night or something - but this was the first time I had made a very large plan. Something that was going to take over a week, and it totally got ruined, and I wasn't able to go, and I remember just crying about it. It was tough, and it was frustrating, and at that point, I can genuinely say I did. I felt angry. I was sad and frustrated, but that secondary anger came because I was sad and frustrated, and I wasn't able to do these things.

ALYSIA: It really makes you feel helpless. That's why we push self advocacy and self care so much, because that's the only level of control we have over our illness, is maintaining our health, maintaining our mobility. But when a flare comes, we've already done all we can do, and it's unexpected, and when it happens, and it throws a wrench in our works for whatever that is, it is frustrating.

That's why I feel like for us, often anger and sadness go hand in hand, because you're sad for what you can't do, you're angry for all the effort and planning you put into something and then it can't happen the way you planned it. Not only are you dealing with the physical effects of the disease, but you're dealing with the mental effects of not being able to carry out what you had planned. And that can be a lot.

Also, I feel like when that's going on, isolation and misunderstanding can be big factors. When you're expected to be in a place and people are expecting you to be there, and you say you can't, they don't always believe you. They don't always understand your reasons because you'll hear people saying, "Oh, you don't look sick." And that feels dismissive. And it feels invalidating when you know what's happening within your body ,and you know the effect that it is having on you. And so over time, Those little experiences can lead to resentment and a sense of being unseen and unheard.

STACY: And there's also the aspect of anger as a defense mechanism. I get my Valkyrie on. I want to be strong. I want to make my family and my friends proud of my ability to power through even when things are hard. So when I can't, because there are just times where it's not possible, anger becomes a defense mechanism. It's a way to lash out. and control at least one little aspect of what is a very difficult situation to live through.

It's easier to feel angry than to confront your deeper emotions like fear and sadness. There's a lot going on there that it'd be hard for me to unpack right now, but let me give you an example. Fear about how your illness might progress. Fear that you will never get well again. Sadness about everything that's changed in your life.

These are things that are going to evoke anger in most people because dealing with the very stark reality of looking at things and realizing I am not, nor will I ever be again, what I once was it is hard to look in the mirror, the proverbial mirror, and say that to yourself. It's easier to be angry And so it's a defense mechanism.

It's what we do to protect ourselves until we can face that and deal with it and make a plan, but the problem is that when we're in that defense mechanism mode, we're lashing out at the people around us and probably lashing out at ourselves as well.

BECKY: That is really such a good point, Stace. I think that anger is very natural, but I think we're also all aware that if we don't properly address it, it can have some pretty negative impacts on us. There's some beauty sometimes when you're angry, you know going and punching a pillow or doing something just in the moment, there's that release, but if you are angry all the time and you carry it around with you...I don't feel good. I don't like that. I don't like the frame of mind that it puts me in. I don't like the way that it makes me feel physically. I feel more stressed. And studies show that chronic anger can actually increase inflammation and stress levels. It can worsen your autoimmune symptoms.

ALYSIA: It's important that we learn how to identify anger and release it in healthy ways. We're going to talk about some strategies for doing that later in the episode. But I do want to make sure that you realize there's nothing wrong with feeling anger. We don't want to demonize anger as an emotion. It is absolutely normal to feel anger when you are dealing with autoimmunity. This is why we're having a whole episode about anger and sadness, because it's something that you're not just going to deal with once. It's going to come back repeatedly, and that's why we thought it would be important to discuss today.

STACY: It's a protective mechanism that our minds and bodies throw us into until we can come back and deal with the initial emotion. That's why it's a secondary emotion. It's where our minds and bodies go to anger, because we can't cope with what caused that anger.

We know that it is very much like the scabbard of a sword. The real problem is just being covered up by the anger. We have to keep the sword covered until we can handle it in a healthy way, so the scabbard exists for a reason, but we have to be careful to not let it vent out on other people. It's a lifelong lesson to learn how to use anger as a means to come to an understanding of your needs. Acknowledge it, see that it's happening, and then work on the root cause of it. That's a lifelong journey.

Sadness is another emotion that is deeply tied to our autoimmune journey. Alysia, why do you think sadness is so prevalent?

ALYSIA: I think sadness is prevalent because grief is a form of sadness. And I think when you have been diagnosed with an autoimmune disease, you are grieving so many things.

You are grieving the loss of who you once were. You are grieving the abilities that your body used to have. You are grieving the simplicity that your life used to have before you had to navigate all this crap. You're grieving what your relationships were before the impact of autoimmune disease. I mean, to me, sadness comes from grief or loss. I would say that is the primary source. It's valid, and it is necessary to feel those feelings and process them. And we don't like to feel sad. We don't like to feel angry. Those are not emotions that I know anybody enjoys feeling, but it is so important that we allow it, that we hold space for those emotions. Because when you hold space for them and you allow your body and your mind to feel those things, it will more easily let them go when you do the things you need to do to process those emotions.

If you are burying them, if you are suppressing them, if you are ignoring them, it's going to be harder to let those go. There's maybe a mental block. because you haven't acknowledged and let yourself feel it, your mind doesn't want to let it go yet. But if you've allowed yourself to feel it, your mind says, "Okay, we felt that. We felt it. We've acknowledged it. Now it's time to process and move on."

BECKY: And I think it's important - sadness, we're going to feel it again and again, because any form of grief, the autoimmune disease, where you have a chronic disease, where it's going to continue through your whole life, you're going to grieve over and over again, sometimes for the same things, sometimes for new things that you're not able to do or, or things that you feel like you're missing in your life. And like Alysia was saying, we have to be able to process that to overcome it and recognize that it is completely valid to feel sadness.

The expression of "fake it, tell you, make it" - and we're not saying pack your feelings away and don't acknowledge them. We're saying, recognize you're going to have these feelings, acknowledge when you do. And then like Alysia said, recognize that you're going to try and move past them and to find something better. When we talk about finding joy, I think for anybody, finding joy is a process, but I think for those of us that have autoimmune disease, where the chronic nature of things, there's no quick fix. We can feel overwhelmed, helpless, because of our diseases, that we need to recognize, if we want to find joy, we can't just sit around and wait for it to come to us, we have to go looking for it.

STACY: I think that we have to remember, we have to be proactive in our navigation of our feelings. And that means we have to own them. So we talk a lot about advocacy, and I think this is a really good example of how we have to advocate for our own well-being. I think about any kind of grief. When we lost our mother, it took us a long time to be able to go through the things we received from her and open up those boxes and look at what was inside.

Just like when you lose someone, you have lost yourself to some extent. Autoimmune disease turns you into the person that you never knew you would be, and that you never wanted to be, but it can also be a beautiful thing when you learn to find your way forward through the grief.

When all of us opened those boxes, it wasn't just grief. It wasn't just sadness at losing our mom. It was also "Wow! Look at this, look at this beautiful thing that I remember, or that I learned." Our discovery in autoimmunity is something that we gain as we go forward, not like when we lose someone, and we gain good memories from the past. This is something where we have to create new memories in our future. We have to have the positive mental ability to do that, and we have to navigate it. So we have to lay the map of our new life out in front of us and figure out how we want to navigate the concerns and the very real problems that we have.

ALYSIA: I think that for me, gratitude practices have been very helpful. Whether that be prayer, whether that be meditation, whether that be journaling. When you focus on gratitude, it doesn't erase your sadness, it just shifts your focus toward the positive aspects of your life, and for me personally, I feel that that lightens my emotional load over time. That is one of the most powerful ways, I think, to shift the focus from negative emotions of anger or sadness to focus on those things that are going to bring joy and peace into your life. I believe that gratitude is the key there.

BECKY: I would agree. And I think gratitude totally leads into what we're talking about next, which is healthy coping mechanisms. I think gratitude is actually a huge one. Some other healthy ways that we can cope with anger and sadness are mindfulness and meditation. They're great tools to help you stay positive and to help you reduce the intensity of negative emotions.

We've talked a lot about those in previous episodes. Doing something as simple as focusing on your own breathing and being mindful of that can actually bring a sense of calm even on those really tough days. Guided meditation is great for this, by the way. It can help get your mind off things. It can help reduce the intensity of those negative emotions and help you cope with them.

ALYSIA: I think we all know that physical activity is another powerful outlet. Exercise releases those feel good hormones, endorphins, and it is a natural mood lifter. Even if it is taking a short walk, especially if it is an outside walk, something as simple as doing a few stretches can really make a big difference in how you feel emotionally and physically.

And it's not just exercise that we can do to create those feel good hormones in our bodies. There's a lot of different hormones that cause us to feel good. And there's a lot of different things we can do to create those within ourselves. And sometimes it's as simple as spending time with a loved one that is supportive. Somebody who knows you, loves you, supports you. Doing something for somebody else, an act of kindness for somebody else that's associated with [the] pleasure and reward part of your brain.

Meditation, like Becky mentioned, deep breathing, mindfulness, those are powerful ways as well. But think outside of the box, things that make you feel good. Listening to music, dancing is a really good one. Painting, writing, drawing, things that engage you in a creative activity. They can be not only rewarding to you, but they can shift your focus again. from those negative emotions to the positive ones. Get some sunshine, spend some time in nature or a garden.

Obviously, we're going to go back to our big six. I know we've already mentioned several of those now, but even as simple as eating a healthy diet, when you are angry or sad, have yourself a nice big salad with some healthy proteins and some omega. veggies. You will feel better even if it's a minute amount when you're taking care of your body physically and mentally, your mood will lift.

STACY: Take a nap. It's amazing what 30 minutes of good solid sleep will do for your soul and for your mind and for your attitude. One of the other things that we can do is we can build a strong support system. I think it's really key to have people that we trust that we can talk to, whether it's family or friends or a therapist.

I have an amazing therapist and she provides much needed perspective and emotional relief. Because a lot of the pain that we feel is physical, but a lot of it is emotional, and some of it's really hard to process, and self-hatred becomes a very real thing. But if we have a friend who always loves us no matter how cranky we get, or picks us up and takes us and gets us a hot cocoa, then we know that we are seen. And it doesn't feel so lonely.

Try and build a strong support system. That can be online forums. That can be with the people around you. My doctors are some of my best friends. When you find a good doctor who's really in your corner and really wants to see you well, it makes a huge difference. I'm going to tell you now, if your doctors don't want to see you well, get different doctors.

Because most of the people that I work with now, after being careful and curating my medical team, they are good people. They have a sincere desire for my well being. And I say curate because you have to take the time, and the energy, and the effort. To find good people that make your life better.

BECKY: It's very true. And I also think, and I would consider it even its own coping mechanism, you know, unto itself is setting real expectations. It's going to be crucial. Chronic illness means that you are going to have to adjust your goals. And you're going to have to start celebrating those small victories, because some days it feels discouraging. But some days if all you do is get out of bed and make yourself breakfast, hopefully a healthy one, whatever it is...if you're having a bad day, pick your short list and start celebrating those small victories.

It is okay to pace yourself. It is important to prioritize your well-being, that means setting new and realistic expectations. And sometimes that's hard - kind of listen to your body - and it takes practice. And realistic expectations are probably going to change from day to day, because whether or not you're in a flare, or whatever kind of day you're having. One day, you might be able to do three or four times more than you can on a flare day. Listen to your body and take it a day at a time.

ALYSIA: It is important to take things a day at a time, because as you said, it changes from day to day. You don't know if you're going to be flaring, you don't know if you're going to have energy, if you're going to be [having] super bad brain fog. What I do know is sometimes those emotions can become overwhelming.

It's hard to know when to seek professional help. We convince ourselves that we can deal with emotions. Sometimes we need help. So if sadness is something that has been plaguing you, anger has been plaguing you, if it's been a long-term thing more than a few weeks, you need to just get help. Nobody wants to feel this way.

You don't want it to affect your well-being now and your personality. I know people who have gotten old and cranky because they didn't feel well, and they didn't get the help they needed for their mental help or their physical health. And then they were just cranky as they grew old and they were not fun to be around.

I don't want to be like that. I'm going to get the help I need, whether it's physical or mental, a therapist, a counselor, they can provide you tools and strategies much better than we can on a podcast, things that are tailored to your situation, your personal needs to help you navigate your emotions more effectively.

There is no shame in getting help to manage these emotions. They can be a lot. And oftentimes, when you've been diagnosed with an autoimmune disease, mental health issues might be something that come down the road for you that you didn't expect. Probably weren't expecting autoimmune disease either.

STACY: I think it's important that we understand that people don't always know what is going on with us. It's easy to lash out and say something like, "You don't understand me!" And it's amazing how much better it comes across to the person that we're talking to when we say something like, "I feel misunderstood, but I'd really appreciate the chance to share more about my experience so you can understand me better."

It's amazing how just using kinder words helps them want to be there for us more often. Speaking of kinder words, we have to not forget self compassion. We need to treat ourselves with patience and kindness. It's okay to have tough days, guys, we're all gonna have them, but if we learn to be bold and ask for the help that we need, whether it is from the people around us, or even being kinder to ourselves in those moments when we're just struggling, we sometimes forget that we have to have self compassion. It's important for us to do that.

BECKY: Along with self compassion and all these great coping mechanisms and the things that we've talked about, we need to talk about building resilience, because we need to have that ability to bounce back from our challenges. That is so important. But when you have autoimmune diseases and every day is a challenge, it's a skill that we can build.

Some people might be born with it, have a natural tendency toward it, but it's something that you can work on and can be built. A positive mindset is a great place to start with it. You can focus on what you can do rather than what you can't do.

We have to start where we are and recognize that there are new limitations and new goals that we have to make, and different things that we need to do.

ALYSIA: I think that the positive attitude, the mindset that we're discussing, that's our number one of our big six that we talk about. It cannot be emphasized enough! What a difference that is going to make in your life when you're trying to shift your mindset instead of beating yourself up, one of the things you can do is highlight strengths that you have that might help.

For me, I've noticed I have developed some talents since I got autoimmune disease, whether they are emotional talents or physical talents, whatever. But I do have problem solving skills I never had before. I think outside of the box to solve things in ways I never did before.

I'm also much more empathetic than I was before. When I recognize these strengths, these things that I have developed during the quote unquote "negative years of being unhealthy," I realized that it hasn't been all bad. I have some really great stuff has happened. I have developed in a lot of good ways. As well as the struggle, there has been goodness that has come from it.

STACY: I've learned to celebrate what I call micro victories because they help us to build resilience. They feed those endorphins. And when we do that, it gives us a few more clicks on our power bar. Because negativity, there's nothing that will drain your power bar faster.

BECKY: We want to help increase our power bar, as it were, a little bit more. We need to find meaning and purpose in what we're doing day to day. And I know that sometimes that can really feel like a challenge. Find whatever it is that works for you. Maybe you have kids, you have a family, that's your meaning and purpose and helping them. If you have pets, animals that you love getting up and feeding them and taking care of them might be your purpose.

Whether you're going out volunteering, advocating for other people, pursuing whatever your passion project is, find something that you enjoy, that you're passionate about, that gives you some kind of meaning in your life and a sense of purpose that will build the resilience as well as give you a little bit more in your power bar.

ALYSIA: I think with any negative emotion, there's going to be a flip side of positivity there that you have to find. And that's not easy dealing with anger, dealing with sadness. That's not easy, but when we acknowledge it, we recognize, we label it, we allow ourselves to feel it, and then we do those things that are going to help us process them, and let them go, or at least let them not be the main focus of our life.

I can't say with all honesty that I will ever let go of the sadness that plagues me from losing the life that I had before I was sick. That sadness is always going to be there. I'm always going to grieve that. Focusing on it doesn't help me, hasn't helped me, won't help me in the future. So I am choosing to find that flip side of the sadness and say, "Okay, feel it. It's there. I accept that. I am going to continue on my journey, find my people, find my purpose. I'm going to take care of myself. I'm going to build resilience and I'm going to be compassionate. I'm going to find allies and I'm going to be an ally to people that are going through similar things to myself."

So we hope that today's episode gave you some of those tools and a little bit of inspiration to navigate the emotional challenges that you are living with, with an autoimmune condition.

BECKY: Thanks for joining us today and tuning into autoimmune adventures. Don't forget to subscribe at www.autoimmuneadventures. com. Leave a review and share this episode with somebody who might find it helpful.

Remember that you are worthy of joy. Your disease does not define your life. You do.