EPISODE 12: Restructuring Your Life After Diagnosis

STACY: Welcome back, autoimmune warriors. Today, we're tackling a big one, restructuring your life after an autoimmune diagnosis. Whether it's managing a new set of limitations or adjusting to a different lifestyle, it can be really overwhelming, but don't worry, you're not alone. In this episode, we'll share tips and strategies for rebuilding your life, setting realistic goals, and finding purpose and joy amidst those challenges.

Let's dive in. But first, here is today's Good Bit Minute. Sometimes in life, we have to take a bad experience and turn it to our favor. Today, we want to tell you a little bit about Mammoth Cave and how they took bad reviews and sarcastic humor to turn the bad to good. After several bad reviews, the park decided to use a little laughter to advertise their attraction.

I'd like to share a small bit of that with you. "While we think the world's longest cave system and over 4, 000 years of human history is amazing, others find the cave And there is nothing cool here to see. Fair warning, there are bugs in the outdoors, cellular service is spotty, and there are stairs on some of our cave tours. A world of regrets awaits you at Mammoth Cave."

Now talk about making a tough situation and making it a little bit better. They get a gold star for making the best of this rough scenario. And that is what we want to talk about today. It's how we can take a diagnosis and restructure our life. To make it even better.

BECKY: And the first thing we need to recognize when we're restructuring our lives is it is going to be an emotional roller coaster, and we need to acknowledge our feelings and not suppress them. We need to acknowledge that there's going to be grief there. There is always grief about the life you had before your disease.

There's grief sometimes about the future you'd envisioned yourself without your current diseases, whether it's something as small as the morning donut that you'll miss because you've gone gluten or sugar free, or if it's as big as something like battling infertility, giving up on a job you love, or even having a loved one who can't handle your new diagnosis walk out of your life.

Any of those really major ones, or even the small ones. Be kind to yourself and allow yourself to grieve. After you've had some time to grieve, you need to focus on acceptance. Accepting your diagnosis doesn't mean giving up. It means embracing a new path for your health and well being. And sometimes you might wonder why we suggest viewing your disease as a mountain that you need to climb, because then you can view it as part of a new adventure, rather than a roadblock in a path that you would rather not take.

ALYSIA: So when you get this diagnosis and you, you might not realize in the beginning that you're going to need to do some restructuring in your life, right? I think as time goes on and your symptoms get worse, um, or you learn more what your particular challenges are going to be, that's when you have to come to terms with that. Like she was saying, like accepting, and it's important that you redefine what normal is to you. Um, grieving and accepting are the steps you need to take and then you need to say, okay. "How do I redefine my normal?" And that is a little tricky. I think at least it is for me still years later, because I don't want my normal to be what it is.

STACY: One of the things that I think we need to understand that we're going to be grieving is that our life was a certain way we were living, for instance, if I can use an analogy, we were living in this beautiful place, and everything we did didn't require immense amounts of effort. And now suddenly we find ourselves at the foot of this mountain, and we're being told that our only option is to climb it. If we want to continue with this adventure called life. So now, What used to be easy and used to be comfortable has become difficult and challenging, but I'm here to tell you that despite the fact that that is the case, if you allow yourself to grieve, which is a healthy process, then you will be able to get beyond that and you'll be able to look at what's in front of you as a way to become a stronger, better person.

ALYSIA: Yeah, I think that's very, very true. And you might question your own strength. You might question if you have the ability to do this. And I'm here to tell you do, if I could do it, you can. If, if my sisters and I have done it, you can as well. Um, but you do have to redefine what normal is to you. And you, by doing that, you've really, I mean, it goes back to our last episode where we talk about stress management and how vital it is that you prioritize things in your life. You need to identify what your core values are. You need to identify those things that are non negotiable in your life, and then you need to prioritize them.

Um, that's something that it's not an easy process, but it is essential when you are restructuring your life. Um, we have families, a lot of us have children, we have jobs, we have careers, we have a home to take care of, we have friends, we have pets, we have hobbies, our kids have their own situations going on. They have their extracurriculars and they have the things they're doing. And as a parent, that means we have to take on that responsibility as well. And so you have to identify, um, the things that are going to be your top priorities.

Um, I totally think back to an object lesson that you've got a jar when you're talking priorities, you've got a jar and that is the time and energy you have, and you have a handful of large rocks and you have a good handful of small rocks and you have probably about a half a jars worth of sand and you've got to fit all of it into the jar.

Now, if you dump the sand in first. And then you put in the large rocks and the small rocks, you're going to find you don't have room in the jar. You can't fit it all in there. So, you have to take all of it out again and then identify what those big rocks are.

That's going to be for me, that is going to be my family - big rock; children - big rocks. Um, my, my job, obviously big rocks, my friends. Those are going to be some, they're going to be rocks. I'm probably not going to be as big as my family rocks, but they'll be some of the smaller rocks, you know, hobbies, taking care of your home, your pets, these things, and when you put all those rocks in first, and then you pour the sand, which is all the little odds and ends, all the, all the little things that you, you know, you have to do in your life - but the things that you wouldn't really prioritize high up on your list - you pour the sand over the rocks that are already in the jar, and suddenly, you find that that sand fills in the cracks, and you can fit all of those things in. The only way you can make that work is if you put the "big rocks," quote unquote, in first. You prioritize the things that are most important first.

BECKY: And because the little sand is representative of the things that don't matter as much, If by chance you find that almost like your jar shrinks, you don't have as much energy, you don't have as much time, you have the big rocks in there first, and it's okay if all of the sand doesn't fit at that point. If you don't have the energy and the resources to do it. That's, that's another thing. It's okay to say no, you've got the important things covered. The sand is just extra.

ALYSIA: Yeah, I agree. Because even as I was describing this, I was thinking, what if I don't want every little nook and cranny filled with sand? What if I want a little breathing room? And that's very real. Like as a parent, um, I think I've mentioned my older three kids got a very different mom than my younger two kids got in their young, um, in their very young years. My autoimmune issues popped up, um, while I was pregnant with my fourth and just continue to get more difficult in those very early years.

Um, while my fourth and fifth were little ones and I really did have to adjust my parenting style. And I relied heavily on my husband, I relied heavily on my older kids, which I didn't really love. I still have some mom guilt about that, but they loved their little sisters and they were very helpful to me during a time where I was trying to figure out why I was always exhausted. I was trying to figure out why I could never get enough sleep. I could never feel energized. And. It took me some years to get my diagnoses and to figure out what was going on. And in that time, I had to be very gentle with myself. Um, the mom guilt was very, very real.

It still is very real guys. I, I can't say I have processed all of that. Um, my kids understand now, my husband understands now, um, my power bar is, is what it is, and when I have given what I can give to, to, uh, um, my day, and my power bar is is on empty, they understand that, and they step in and they help me. And it's, it's hard to humble yourself. It's really hard to humble yourself and to recognize that, um, you don't have the same capabilities you had before, but there is a lot of beauty in accepting help from others, accepting help from your, your loved ones and accepting help from total strangers.

By finding a community, by listening to a podcast, by, by reading their story, by hearing their story, and you find that validation in your experience. And I, I'm grateful for that. I'm grateful that I have supportive family, but I also feel like it's very important to seek out your tribe, seek out your people, because as you're restructuring your life, you're going to find that you need that more than you ever have before.

STACY: I think that as we allow our family and friends to come to an understanding with us of what is going on, that it also makes it more clear to them why it's important for us to prioritize our health. If we allow knowledge to be power and educate ourselves about our autoimmune diseases, we are then fueled with the necessary information to take care of ourselves.

It's hard to prioritize your health if you don't even know what your health requires of you now with this new disease. So, it's extremely important to remember that knowledge is power and the best way to power yourself up mentally, because you can't always physically power yourself up, so mentally power yourself up to educate yourself about your disease and the treatment options that are available and the things that will help you.

When I first got diagnosed with lupus, I didn't know that garlic was bad for me. I found that out pretty soon. And it was amazing how, when I removed that, cause I love garlic, but when I removed it, a lot of those aches and pains that I've been having went away. So, but I never would have figured that out had I not done the research. So you have to learn about your autoimmune disease.

BECKY: And along with that, you're going to want to find the right medical team because like Stacy was saying, when she didn't know about garlic, I didn't know that was a thing too. At first with lupus, it was something that, you know, my doctor pointed out to me. And if you have a doctor that specializes in your type of autoimmune disease and listens to your concerns, that is a huge way to help you restructure your life because they will be able to tell you what works and what's going to be a challenge. And they can be a good guide in helping you determine, you know, what, what you're going to do to help better your health and to try and manage your disease.

ALYSIA: Yeah. I love that. And I know that we've talked about the importance of finding good doctors. And, um, I don't want to minimize that in any way, shape or form because the right doctor has been a huge blessing to each of us in different circumstances. But I do want to say we shouldn't, we shouldn't ignore, um, exploring holistic approaches.They can be super helpful for symptoms, and they can be super helpful for stopping the progression of your disease. Some of those holistic approaches that I would recommend, we've talked about meditation, super easy. You don't have to pay anything to do that. It is hugely beneficial for mental and physical health.

Um, I think we've all mentioned our chiropractors. My chiropractor is on my team. He is part of my support system, and I see him every week. Um, I don't think that's necessary for everybody, but it is for me, and it makes a huge difference in how I feel. Um, acupuncture can really help manage your symptoms. Um, especially pain. I know Becky, you have found good benefits from acupuncture. Um, I have had my daughter in for acupuncture, and she has had great benefits from it. Um, there are a lot of different things that you can find out there. Obviously, be wary and be skeptical in a healthy way, but don't be close minded to them because there are things that that are out there that traditional Western medicine approaches are not going to be able to um, address.

STACY: And along with keeping your mind open, you have to make certain adjustments. When you get a diagnosis, you're going to sit down with your doctor and, and have a conversation about what things need to change. And one of the big adjustments I had to make this last year, as I had mentioned, was quitting my job and seeking a new path.

So, that's been an interesting thing for me, but it's because my work life balance was not good. And it's crucial when you have autoimmune problems that you have a good work life balance. So you have to evaluate your work schedule and your workload, and maybe you need to discuss options with your employer to adjust things, or give you a more flexible arrangements.

Maybe you need to, as Becky talked about before in our last episode, maybe you need to start making a plan to change things up and move on to something different in your life. And I know that that isn't possible for everyone. I understand that. But ultimately, if you're not here, it won't matter where you work.

You've got to be healthy enough to stick around for this job to even matter. So, I would highly suggest that you think about, you know, having a good sit down with your boss, or considering a different change.

BECKY: Yeah. And those changes might be changing your job. It might be going from full time to part time. For me, I that's actually mine was a very progressive thing. I was working full time and I was honestly not just physical, I was having some cognitive issues and the job that I had been working previously was very...I needed to be able to use my brain and not have brain fog, and I was having some genuine cognitive issues and I could see it in my work performance.

And, um, in discussions with my husband, I, we decided that it was going to be better for my health if I went down to part time. And I did part time for a few years, but then physically I was having such a problem. I was working, um, at an, as a supervisor for an afterschool, uh, program, loved it, loved working with the kids, but physically, I was getting to the point where I literally just couldn't keep up with them.

Um, I needed to have knee surgeries and other things at the time, and I wasn't aware of that, but point being, I had to make the decision to go from even part time to just doing stuff at the farm, and in the last two years, Um, as my, I've still struggled with some of my health issues and I've had to decide what my big rocks were.

As much as I've loved farm life, we have downsized our farm. We used to have goats and pigs and, and, uh, lots of Angora rabbits. And we, in the last year we sold our goats, we sold our pigs. We're in the process of closing down our rabbitry. and we have a much smaller farm than we did 10 years ago. And that's okay.

That is honestly one of the things that I have been grieving. is even the change there, but I've accepted it, because I found as I've done these each time, I do see an improvement with my health and it allows me to have the time to be there for my family and do the things that I consider my big rocks. Um, you might want to consider disability.

That's not going to again work for everybody, but some people are in a place where it's severe enough where you really want to consider that, and be aware that there's different kinds of disability. You could get full disability, but um, we know our brother who has Meniere's and sometimes has some really horrible episodes with it doesn't happen, you know, a ton, but he actually got what's called intermittent disability, which is essentially when he has a flare of his Meniere's that puts him out of work for multiple days in a row, it's considered disability and he is still able to keep his job.

So, if that's something, I would highly recommend consulting a disability lawyer, a good one, most good ones do not charge you unless you win your case, but you want some, a good legal backing, because almost everybody that I've talked to, excuse me, that has gone through disability, um, applications, it gets denied. And sometimes they can do it again and get through, but usually there's enough denial there, the most successful people who are the, I talked to personally that have gotten their disability taken care of, have gone through a disability lawyer.

So be aware of that, but it is something to consider if you're literally to the point where you need a way to provide for yourself, but you physically can't do a traditional job anymore.

ALYSIA: Yeah, if you've got to go that direction, um, or if you feel like you might have to go that direction in the future, start keeping track of your...document, everything now. Get with your doctor and start keeping good track of all of your symptoms, all of your pain, the progression of your disease, because you're going to need all of that if, if you've got to go down that road at some point in the future.

So, um, if you are unable to change your job, if you are unable to, um, make a change that is going to have a huge impact, um, on your health, then you've got to, like Stacy said, have a good sit down with your boss and, um, ask for help, ask for support, um, delegate tasks at work as much as possible. This is hard. You got to swallow your pride here.

This seems to be a theme, right? Humble yourself, humble yourself, swallow your pride, ask for help, accept the help. Um, reach out. And if you're not receiving that support, like we talked about in our last episode, if you're not receiving that support, really, really consider making a change to a place where you can be supported. Sometimes, people don't know how to support us. We have to tell them, we have to let them know. You have to be specific.

BECKY: Kind of one that was a game changer for me, because I didn't realize how prideful I was about asking for help until I was going through cancer and my best girlfriend was talking to me and she said, "You have got to ask people for help."

She said, "I know you're struggling, but you don't realize how hard it is for people who love you to watch you struggle, and we don't know what to do." And she said, "A way that you can help us is by telling us how we can help you."

I had always viewed it like I was going to be the inconvenience, and again, back to what Alysia was saying, if you find that you are asking for help and people are treating you like you're the inconvenience, then maybe you need some relationship counseling, or you need to find less toxic people. Um, and you need to decide what is going to be good for you.

STACY: One of the things we really need to do that helps a lot to make us feel better about things is we need to focus on what we can control. I want to talk for a minute about Viktor Frankl. I don't know how many of you have heard of him, but he was a man that suffered through the Holocaust.

And he wrote an amazing book called Man's Search for Meaning. And in that book, he has a couple of quotes that we want to share because we think that there are very applicable to times of trial where you have to change and make the best of things when you can't change what's going on around you.

So one of the things that he said was, "When we are no longer able to change a situation, we are challenged to change ourselves." And I love this, because this means that we have to embrace who we are in the here and now, and let the rest of it go. If we can't change our disease and make it disappear, then we have to change how we deal with it, and how we look at the world around us through the eyes of someone with autoimmune disease.

Another thing that he said was, "Forces beyond your control can take away everything you possess except one thing - your freedom to choose how you will respond to the situation." So, this is about attitude. You can control your attitude. And that doesn't mean you don't have days where you want to sit down and have a good cry. And maybe you do.

It's about picking yourself up after you hit the ground, okay? Cause none of us will tell you that we don't hit the ground, and some of us often. So, just focus on what you can control and let the rest go, because if you can't control it, there's no need to waste your time and energy on it.

ALYSIA: I find that when I'm doing that, my struggle is, I do like, I have a little bit of a control freak issue, um, and learning to let go of those things I can't control is hard. That made me think of perfectionism, right? That is another thing I personally really struggle with. I would never hold anybody else to the standards I hold myself to, so it's really not very kind to myself, but, um, I think in this process of restructuring our life, we have to be realistic. We have to set realistic goals, break down those big goals into smaller, more achievable steps, and just let go of the idea that you're going to be perfect, because you're just not.

And it's going to be a rough road. If you expect perfection, you just really are going to be unkind to yourself. If you think that you are going to just flip a switch, restructure your life back on, you know, I'm on the road, I'm going to be healthy, everything's going to be great. It's a hike. It's a, it's an adventure. We're hiking up a mountain, guys. Um, there's no perfect way to do it.

So be prepared to have to accept the imperfections of life, the imperfections of yourself, and embrace that rather than looking at it as a bad thing. Does that make sense?

BECKY: Absolutely does. And along those lines, consider adapting your hobbies or discovering new passions, because you're going to find that some of the activities that you love doing might not always fit your energy levels anymore.

And I know for me, the really big one that I think of is, Is that I love to travel and for me travel used to be very hands on, lots of planning. I still do a lot of planning because I can do that even when I'm resting in bed or whatever, but used to love to do tons of hiking and things like that. I can still do some walking and some low impact hiking, but I cannot do the level that I did before I had autoimmune problems.

And also, because I have lupus and I have an issue being out in the sun for very long, even when I'm wearing sunscreen, I have to do a lot more indoor things when I travel now than I used to. Um, but I've actually found that sometimes that slowing down, I've found new things to see and new interests.

Um, one of the things that's been interesting. I have always loved to cook, but I'll be honest. I was, I was a more of a soul food, comfort food kind of person, and I was not always good at cooking healthy food and dealing with my autoimmune diseases and researching and knowing what feels good for my body, like what helps me feel better, I have learned to cook a lot of healthy food that I don't think I would have learned to cook otherwise.

Um, One of the other fun things that I enjoy, I love reading, and with some of the extra time when I'm not feeling good and have to put my feet up or whatever, I have found that I really love supporting indie authors, and that's one of my new passions. I love to find some good indie authors out there and read their books and support them. And I have a lot of fun with that.

I don't know about you guys, but what are, what do you feel like since you've had autoimmune diseases, some of, some of the adapted hobbies or like new passions that you've found?

ALYSIA: I like doing crafts with my hands, things that, um, I, I've been into beading. I have always loved, um, working with paper, pretty paper. I love paper. I'm a weirdo. I have stacks of it sitting right next to me on my desk. A big, big stack of various kinds of beautiful paper. And I like to make cards and I used to be a big scrapbooker and, um, I, I like to craft with paper. I like to craft with beads. Um, I have also found that I really enjoy coloring. I loved doing that as a kid. And I love doing it now. It's very therapeutic.

STACY: I have a lot of things that I do therapeutically. I've mentioned my little herb garden that I have outside and I have rose bushes and I keep an audio book on running on my phone while I go around doing other small tasks around the house, and then I feel productive, but I'm also learning at the same time, or I'm enjoying being in some fantasy world or whatever the case may be. While I'm doing something else. So those are some things that I like to do.

Um, but the key here is people you're not alone and there are millions of people, millions of people who navigate autoimmune disease every day. And it's important that we find support, and so look for your tribe, find your groups, come and hang out with us once a week. We love having you here. Um, connect with people who understand your challenges. Make sure that you are not trying to do this by yourself.

Probably one of the great beauties, and I'm an extrovert, so this is not a thing for me, but one of my dear friends is an introvert, and she has told me that being diagnosed with an autoimmune disease has forced her to be a little more social than she would normally be. And, you know, she's not doing it out in, in the face to face community, but she's become a lot more social online and has made friends and connections that she wouldn't have otherwise made with people who understand what she's going through.

And I think there's, there's not a price you can put on that. It's a priceless thing that I have found in my own autoimmunity is finding other people who understand where you're coming from and appreciate that sometimes it's a huge, like, please give me a blue ribbon kind of day, when you get out of bed and you make breakfast for the kids and you still have enough energy to sit and read a book for a little while, you know, sometimes it's just that way.

STACY: I love that. I think that it is a beautiful thing that we live in a world where we can find that kind of support and friendship online. Um, because as we've mentioned before, autoimmune diagnosis can be very isolating. You can feel very alone and in your regular day-to-day life, it doesn't always come up in conversation. It's, it's not something super easy to find friends or, or, you know, that are going through what you're going through.

If you get online and join a group that is specifically for your autoimmune disease. You've automatically just landed yourself in a pool of people who are going to understand, and who are going to have things to share with you, who are going to be there to listen to you, who will be there to cheer you on and to commiserate with you.

And so we really like, we want to be part of your support team. We want to hear your challenges and your, your success stories. We want you to find validation, hearing the things that we're sharing with you. Um, because. It's a lot of us aren't going to find that in our regular day to day lives. And I do think it's important.

I do think it is really important to find people to validate your experience, to commiserate with you. Like it's almost like a, uh, camaraderie, like a sisterhood or a brotherhood, you know, because you do understand what these people are experiencing and they understand what you're experiencing. There's power in that. There is power in finding those people in your life.

So, just a reminder as you are restructuring your life after your diagnosis, be kind to yourself as you adjust. It's going to take time. It's, you're going to, you're going to have a learning curve there. Um, remember that this is a journey, there's not a destination in sight, there's not a destination period. It's, it's a journey you are on, and so every step that you're taking forward is a path that you are on to a healthier and happier you. You just need to remember that you're not going to be perfect, because you're just learning every day.

Every day is a, you're practicing taking care of yourself. You're practicing, you're learning how to take care of your body and your mind as you go along.

Thank you for joining us next time on autoimmune adventures. We also hope that you will like and subscribe and find us on autoimmuneadventures. com. And most importantly, remember you're worthy of joy and your disease does not define your life. You do.

HELPFUL LINKS:

"Big Rocks" Analogy:

https://youtu.be/cPgMeKfQFq8?si=3-ANxHjvljGXjSA6

Man's Search for Meaning by Viktor Frankl:

https://amzn.to/4ewrB5n

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