The Invisible Fight: Understanding Autoimmune Disease and One Woman’s Journey to Diagnosis and Recovery

In this episode, we dive into the often misunderstood world of autoimmune diseases, which affect nearly 80 million Americans—75% of whom are women. Host Mary is joined by Mindy Knaub, a licensed therapist and autoimmune warrior, to share her personal journey through years of misdiagnoses and the challenges of living with conditions like Hashimoto’s thyroiditis, Lyme disease, and chronic fatigue syndrome. Together, they explore the complexities of autoimmunity, the importance of advocacy in healthcare, and how to navigate life with chronic illness. Mindy’s story is a testament to resilience, humor, and the power of informed self-care.

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Transcript

00:00:00 Mary

Hey, everyone. Welcome to the show. I have been looking forward to today's episode for several reasons.

First of all, I'm having my first guest and the best part about that is she's my bestie.

Second of all, we're going to talk about a very important, timely and misunderstood topic today: autoimmune disease. 

Many of you may have at least heard this term, but even with about 80 million Americans suffering from some form of autoimmunity, 85% of us can't even name 1 autoimmune autoimmune disease.

But I'm guessing there are some of you that know someone who struggles with an autoimmune disease. Even if you may not actually know that you know someone and actually, that someone may be you.

Autoimmunity is the underlying issue in over 100 known serious chronic illnesses and most sobering, over 75% of those who suffer are women – 75% of 80 million! I mean, I don't know if you're good at math, but that's 60 million.

One in 12 women have some type of distressing symptoms related to autoimmunity. For me, it has been lifelong migraines and I had no idea for most of my life that migraines are considered an autoimmune issue.

Many of you listening may have some nagging issue that could be related to autoimmunity, but you've never been told that because another staggering statistic is that most autoimmune patients see four doctors over three years before getting an accurate diagnosis.

Autoimmune issues are so varied and so misunderstood. It's fascinating and sobering how things in our bodies can “go South” when they misinterpret food or other inputs as invaders. Essentially, autoimmunity – and this is simplifying it very, very much– is when the body overreacts. And if it reaches the level of disease, it can be truly debilitating. There is also no actual cure for autoimmune disease, but there are ways to adjust one's lifestyle to ease suffering, conquer symptoms and live an amazing and fulfilling life.

00:02:11 Mary

I think my friend, Mindy, is doing that. I think she would agree when I say that.

I met Mindy through work, and I worked with her for over 8 years. So I have seen the toll that her symptoms have taken on many areas of her life, and today we're going to explore her journey and find out how she has worked– because it is work–  to build the life she lives today.

00:02:34 Mary

One thing I mentioned, and that is important to remember, is that everyone that suffers from an autoimmune disease can present differently, even with the same diagnosis. The mantra you’ll hear me say when considering any mental, physical, emotional, or spiritual issue is, “Everything is important, we are all unique, and all things matter.”

So let me introduce my very special guest today, Mindy Knaub.

00:03:00 Mary

Mindy is a wife, a mom of a very active 8 year old and recently now a mom to a very active puppy. She is a licensed therapist, a fierce researcher on any issue to help both herself, her friends, and her clients and, best of all, she is a loyal and hilarious friend.

Welcome to No Shrinking Violets, Mindy.

00:03:23 Mindy

Thank you, Mary. I'm so excited to be your first guest. I feel honored.

00:03:27 Mary

OK. So I'm gonna launch into questions and we can kind of go back and forth.

I know you shared with me that it wasn't always easy to go back through this journey for you.

I can say that from what I've seen, it seems like things are going really well for you, so I can imagine that combing back through all the things that you've experienced in the journey you've taken can be hard. 

There seems to be a great deal of misunderstanding regarding autoimmune disease. So can you explain for us what autoimmune means and what your specific diagnoses are?

00:04:03 Mindy

Autoimmune diseases result when your immune system is overactive, and that causes it to attack and damage your body, your own tissues.

00:04:11 Mindy

So for example, I have Hashimoto's thyroiditis. So in my case, my body attacks my thyroid. My other diagnosis is I currently have Lyme disease and I have chronic fatigue syndrome which has resulted because of the Lyme.

00:04:24 Mary

So how did you discover your diagnoses? Because as I said in the beginning, many people have a very, very frustrating time trying to figure out what is going on. It can be a very frustrating time when patients are pursuing  adiagnosis through a strictly allopathic path. 

What was that journey like for you?

00:04:52 Mindy

Honestly, in a sentence, it was terrible. And it was very long. I believe you said it's roughly three years and four doctors to be diagnosed correctly, and I think for me it was around three years, but it was more than four doctors.

00:05:09 Mindy

So basically what happened for me was I went on a mission trip to the Bahamas with some youth from my church; it was a wonderful time. Amazing trip, life changing.

I get home and all of a sudden I am experiencing the most unbelievable fatigue. I have a low grade fever and things in my body start to ache and hurt. I just have no idea what's going on and I thought well, you know, I was in the Bahamas. I was working hard for seven days. I traveled. Maybe I'm just rundown. It's fine.

I’ll just rest up and I’ll feel better.

00:05:44 Mindy

After a few more days, I began to get pain and stiffness in my neck, and I had a really hard time turning my head. I had really bad brain fog. Brain fog can mean different things to different people. So I'll explain what I mean by brain fog.

I had trouble with word retrieval, and my cognitions were slow.

00:06:02 Mindy

At one point I forgot the name of a person that I had known for years and literally had to ask another friend what this person’s name was. And that was just horrifying for me because at that point I didn't know if it was going to get better.

00:06:13 Mary

It sounds like it was scary.

00:06:15 Mindy

It was very scary, and I think it was probably very scary for my husband, who never voiced that. But I guarantee he was scared as well, so like most people would do, I went to my PCP.

00:06:27 Mindy

I absolutely love my nurse practitioner. I've been with her for many, many years. And like most clinicians would probably do in her situation, she tried to look at what sort of tropical disease I might have contracted. She tested for things like dengue fever and parasites and things like that. And of course, nothing was coming back positive. 

00:06:48 Mindy

So me, being who I am, was home researching and reading. And I'm coming across these symptom checker things, and I'm plugging in my symptoms, and I'm like, I think I have maybe an issue with my thyroid. Also, I kind of have symptoms of Lyme disease.

So I go back to my doctor and ask her to please test me for Lyme. The test was negative. Then I go back and I read some more and learn that it can take 6 to 8 weeks to show up as positive. It was too soon.

So I had her test me again. Negative. However, that was actually a very inaccurate test, I later learned, called the ELISA test. I don't recommend using that if you ever want to get tested for Lyme.

00:07:26 Mindy

Eventually she exhausted pretty much all the testing she could do with major rounds of blood work. So she referred me to another doctor in the practice and he tested me for a whole slew of things. He did X-rays, he did ultrasounds. They put me through the ringer. Pretty much the only thing they found were some benign gallstones. Because of course, when you're looking that hard, you're going to find something.

00:07:52 Mindy

Oh, and just a side note, if anybody suspects that they have Lyme disease, it's really important to find yourself a functional medicine doctor or what's called an LLMD: Lyme Literate Medical Doctor. They know how to diagnose and treat any tick-borne illness, for the most part. 

00:08:08 Mary

So let me hit the pause button here. 

00:08:14 Mary

We're talking about Lyme disease, but I want to clarify that, as far as you and I know, and let me say, first of all, we are not medical experts. We're talking about our experiences, mine with clients, and Mindy's with her clients, but mostly with herself. Her own personal experiences.

00:08:31 Mary

So we want to clarify that Lyme disease is not considered an autoimmune disease, but I'm going to guess if you ask some people, it would be thought of as an autoimmune issue. Because what is happening essentially, is that your body's overreacting to these things that have entered it. And so your body's immune system – which is really, really complex, but I’m going to try to simplify it –  your body encounters something. So for example, think about somebody with a peanut allergy. For most of us, we eat peanuts, and we don't think anything of it. But if you have an allergy, your body thinks that it is in danger from this and so it's going to mount an assault.

And unfortunately, sometimes that assault can be lethal.

00:09:16 Mary

So anytime we have something coming into our body that doesn't belong there, our body’s immune system is going to address that. And so with Lyme, there is a really intense autoimmune reaction. 

00:09:33 Mary

If we look solely at what is an autoimmune disease, Lyme isn’t classified as that. However, we're speaking of it sort of as it is, because I think, along with all the things that you've been diagnosed with, you can't really pull the issues apart into separate threads.

00:09:51 Mary

We can’t really say, oh, well, this is all Lyme and this is all Hashimoto's. It doesn't work that way. So we're Speaking of it as an autoimmune issue because it's very chronic, right? It’s difficult to isolate.

00:10:09 Mary

And also to clarify, we are not knocking the allopathic medical community. These things that we're talking about, they are very complex. They have to do with all the parts of our body, with how we digest things, and what foods are doing to us, and how our gut communicates with our brain. All of those things are, again, really complex.

Our medical system isn't typically set up to manage complexity. So as Mindy said, you go in, you get a blood test and typically you get a diagnosis. And you get a medication. But a lot of the things that we're talking about today are not linear, and they don't work that way.

00:10:51 Mary

So just to clarify, when we talk about Lyme, there will be some medical professionals that will say, oh, that's not autoimmune. I think that Mindy and I think of it more like an issue of autoimmunity.

00:11:02 Mindy

That's a great clarification, Mary. Thank you for that.

So basically what happened next was that my PCP said she had exhausted all that she could do.

She said that I should go see an infectious disease doctor. I was thrilled with that idea because they are the people that diagnose hard things for a living. I was so hopeful going into that appointment. My husband was so hopeful.

And the guy we were referred to was so well respected. So I was just feeling really good going into that appointment. And by the time I had met with him twice, he pretty much did not have answers for me.

He said he would like me to take a month or two to see if things improve because the next set of tests that I would have to do were very invasive, such as a bone marrow sample.

00:11:46 Mindy

And I said, whoa, I will happily take a month or two and feel awful and not have a bone marrow sample. Fine by me.

So I took that time, and then eventually I went back to my reading and symptom-checking. Ultimately, I said to my PCP, can you please test me for thyroid issues? Two different kinds of thyroid antibodies.

Most people test for TSH, which will tell you if you have an under active. But it won't tell you if you have Hashimoto's (Hashimoto's being the autoimmune form of thyroid disease), and sometimes your TSH will be normal. Your TSH can be pretty decent, yet you can still have Hashimoto's and still be suffering, and your body can still be very unhappy.

00:12:30 Mindy

Just to clarify, Grave’s Disease is another autoimmune thyroid disease – when you have more hyperthyr00:12:39 Mindy

So lo and behold, my antibodies came back nice and high, and I finally had a diagnosis, which was amazing. I was really happy about that.

And then I was sent to an endocrinologist and given Synthroid to treat the thyroid problem.

And I said, can I please have one of those other medicines that have T3 and T4 medication in them? Because everything I was reading from the experts on thyroid disease said you absolutely need to have both to treat Hashimoto's. So important to give you energy. It'll make you feel better, and it'll help with all the things. And she said absolutely not. I only do those as the last resort. And from what I've understood by talking to other patients with Hashimoto's, that's pretty standard protocol when newly diagnosed.

00:13:20 Mindy

She put me on Synthroid, and I did worse. My lab work tanked and she said, All right, I will put you on a low dose of T4/T3 medication. And for the first time, I had energy. I had a clear brain. I was waking up after 7 or so hours of sleep and feeling refreshed and on top of the world!

I'm like, this is amazing. My life will never be the same.

I was so hopeful. What I didn't know is that the medication has to be raised every two weeks until you hit the right dosage.

And she didn't want to do that.

00:13:54 Mindy

And that's when I finally gave up and asked my husband if we could pay out of pocket and go to a functional medicine doctor, and when I went there, everything changed for real. I finally got incredible treatment.

I'll stop there because I said a lot.

00:14:08 Mary

Yeah. Well, I think, you know, a couple things strike me as you talk about this. And for those of you listening, even though I've known Mindy for what seems like forever, I have not heard all these details.

00:14:21 Mindy

We didn't know each other then.

00:14:22 Mary

Right. And we've talked about it a lot.

I mean, I think that you were my introduction to autoimmune and I didn't get it at first. But the longer I knew you, the more I did!

And you know, now that I'm working through a program to give me more information, it's like, whoa! It's very eye opening. The one thing you said that really struck me, as somebody who has had a very long career and supported myself financially for most of that – I think if somebody had told me, OK, you need to take a month or two – and knowing how you felt, I would have been like, What?

How do people do that? Because not everyone can do that, and I think that's when we go back  and think again that there are 60 million women struggling with this and I think that we tend to just sort of…go along.

00:15:15 Mary

We have issues and don’t feel well, and it's like, oh, I'll be fine tomorrow. Or, I just didn't get enough rest. Or women tend to blame themselves.

And so I think of how often people struggle, and I think about you struggling and doing your own research and telling the doctor what tests to order. That's mind-blowing to me.

And so I want people to hear that if you're having things that don't make sense, trust yourself. Trust your body when it tells you that you're not doing OK.

Obviously once you're diagnosed, you're like, oh, I need to change this. But I think, you know, often part of the social script that we’re given as women is that, if you need a day of rest, you're lazy, or you're not trying hard enough.

00:16:01 Mary

I think all of that is interestingly woven through these issues that you know, 75% of the diagnosis are women. That really struck me. Not only did you not necessarily have the luxury of lying low for a month or two – you know, because people have to work– but the other thing is that you did a lot of the research, and you had to be the person that stood up for yourself and informed the doctors what you needed.

00:16:31 Mindy

Yeah. And I mean, it's a shame that that should fall to the patient who already doesn’t feel well, right?

00:16:37 Mary

Oh, absolutely.

00:16:37 Mindy

But yeah, I find that that's pretty typical of people with autoimmune diseases. That they really have to dig into the information that's out there and try to find answers so they can go back to a trusted health professional and say hey, can we go in this direction? Can we try this? And I feel like, if you really have a good doctor or health care professional, they're going to want to be your partner.

They're not going to want to be in charge as much as they are going to want to partner with you. But of course ultimately, they need to be in charge because you know, we don't have medical degrees!

00:16:57 Mary

Right!

00:17:06 Mindy

And I can be a little dangerous if somebody gave me everything I wanted in the doctor's office. So we do need that oversight, of course, but I've always felt that my nurse practitioner was very much a partner, and I definitely feel that way about the doctors I've seen in functional medicine as well. That's really important.

00:17:20 Mary

Yeah. And I think we have so much more information now. You know, I think when you were doing this research, it was probably much harder to find definitive answers or find somebody that had more of an idea about what autoimmune is, even in the medical community. Because doctors are trained when they're trained and, something that I heard recently (and I can't cite the source) was within five years, most of that medical information is outdated.

But they're working, and they don't have time to continue to update and learn things that may not be mainstream medicine.

00:17:56 Mary

I think we probably answered this, but what do you think has been the most challenging or frustrating aspect of being diagnosed with a chronic illness?

00:18:06 Mindy

By far for me, it's the fatigue.

Somebody referred to it as having spoons.

You start at the beginning of the day, and you have a certain amount of spoons, and the spoons represent your energy. And as you go through your day, you're giving away spoons, and when you run out of spoons, that's it, you're done.

Especially now that my health has gotten better, there're certainly days where I can push through, but there's a certain kind of fatigue I get that I absolutely cannot push through.

00:18:36 Mindy

It is like hitting a brick wall, and my husband is literally seeing me go from, yeah, OK, we're going to take our son to the trampoline park, and then we're going to do this, whatever. And the next minute I'm just like, I can't. I'm done. I have to sleep. And he just says OK, and that's it.

And I crash for over three hours, and then that night I'll go to bed, and I'll sleep for anywhere from 10 to 14 hours usually.

And then I can recover from that fatigue. But that's what it takes for me to kind of get back on my feet. And I've been very lucky: for the time that you've known me, I've worked part time at a college with you. Three 8-hour days was all I could do, as I’d be really tired and recovering the other two days of the week.

Yeah, the fatigue has had a huge impact on my life and I've had to get really good at just setting boundaries around that. And saying I can’t do it. You know, I've gotten good at not planning too much in a week.

I'm happy to add things as I can, but I don't plan more than two or three activities. In any given week, I'll have one thing planned, and if I have the energy, I do more.

00:19:42 Mary

You have a very supportive partner, but the other thing that's always been interesting — and I would say to Mindy, because when we were working together, her office was right next door to mine, which was a blessing and a curse because, you know, sometimes we didn't get a whole lot of work done!

00:19:55 Mary

But I would tell her that she always looks amazing. She would say, I'm so tired today, 

So I think that's important in that you may have someone in your friend group – because remember I said 1 in 12 women have an autoimmune issue —so in your friend group, or  in the group of women at work, or you go to the grocery store and you count 12 women, one of those, at least, will have autoimmune issues.

But you can't always see that.

And that's where I think it must sometimes be frustrating, because we still have a very definite idea of what “sick” looks like. And when you don't look sick, I think there's a lot of judgment out there. And so your message of being gentle with yourself, you know, looking to somebody to help support that, to advocate for what you need and to set boundaries.

Those are all excellent points, and I think it's part of what I think has helped you get to a point where you do feel so much stronger.

00:21:03 Mary

Well, but again, I think sometimes we hesitate to do that. So not everybody is going to understand, and this is another one my themes: you have to take up your space and you have to ask for what you need or find ways to get what you need, even if people aren't going to understand or they're going to disagree.

I think this comes up a lot with a chronic illness.

00:21:25 Mindy

Those are some great points.

00:21:27 Mary

So what advice do you think you would give someone who knows something's not right, something feels wrong, but they may not yet have found a diagnosis or any relief for the way they feel?

00:21:39 Mindy

I would say number one, trust your gut, of course.

And if you haven't felt like yourself, if you're having symptoms that you don't understand where they're coming from, and you could afford to pay out of pocket for functional medicine, I would absolutely recommend that. There are some functional medicine providers that do accept insurance, but most don't because they don't want that oversight from the health insurance company.

Or you can find one that has a subscription, where you pay a certain amount for a year. And you can go as many times as you need to.

If not, I would say, try and figure out who the experts are in the field of what you think is wrong.

If you think it’s a thyroid issue, figure out who the thyroid experts are.

Figure out who the rheumatoid arthritis experts are. You know, whatever the illness is or the symptoms look like.

00:22:24 Mindy

And there is so much free information out there, because chances are, these people may have their own podcast. Or they're guests on 13 other podcasts, and you can look up those.

And they have blogs and they have Instagram accounts and they have Facebook and they have all the social media accounts.

So you can get all this free information from them, and you can read the books that they've written because you know, if they haven't written the books or are on a podcast, I'm probably not going to want to read that information anyway.

00:22:51 Mary

You know, bringing up podcasts is an excellent point because there is so much more information out there. Interestingly, when I first met Mindy, she would say, oh, I listen to this podcast or I listen to that podcast on the way home. So if you heard my intro, you know that we're therapists and so I would be like, I don't want to listen anymore, I just want music on the way home. But you were always a big fan of podcasts.

And that was before I really recognized how awesome they are. But you learned a lot from them.

00:23:25 Mary

And so again, I think that there are just so many more avenues that you can pursue for information. And find people to follow on social media, because you get a lot of free information that way. Or take a few free workshops. The information is out there.

It's just not always easy when, again, like Mindy said, you already feel exhausted and run down and may not yet have the right supports in place yet.

00:23:53 Mary

So again, we sort of covered this a little bit, but in addition to setting boundaries and a supportive spouse, what do you think has helped you the most in managing your illness?

00:24:04 Mindy

I'm just gonna have to go back to my husband, because it's not just that he picks up the slack and keeps our very active 8 year old busy.

It's also that he was willing to change his eating habits to align with mine because he knew that I wouldn't be able to resist temptation, and that was the only way I was gonna be successful.

My husband gave up gluten and dairy for me about 12 years ago and almost never, you know, “cheats,” so to speak. And if he wants to eat gluten and dairy, I ask him to do it away from home. That has been the biggest help that sets me up for success because I can eat the food that is in this house. I don't have to worry about cross contamination. That's made my life so much easier to not have to cook separate meals. All of those things that have helped. And that's been a great gift to me that I would have never expected him to do.

I joked with him. I was like, if you were the sick I wouldn't do that for you. I'm just telling you. But he's really been a godsend.

00:24:59 Mary

Yeah, Mindy and I love food.

And that's one of the things that I think, as I watched you on this journey, you've heard me say more than once. I don't know how you manage not eating food that you love. We're pizza lovers. And Mindy can’t eat pizza.

00:25:16 Mindy

Not real pizza anyway.

00:25:18 Mary

Yeah. And I would say that one of the most important parts of managing your illness is your positivity, because again, I worked with you for eight years. We would have staff meetings with food. And people were always like, what can you eat? What can’t you eat?

Or people would bring things and she couldn't eat it, or she would have to bring her own food and, as somebody who really loves to eat, I was feeling that.

But honestly, I mean, we vent to each other, but I have not heard you just be negative or complain. You know, we acknowledge what's happening with each other, but I think that positivity of pushing forward and doing the research and advocating and just being like, this is how it is. I can't eat this.

00:26:11 Mindy

Well, I appreciate that because I don't have that perspective, and I would not have looked back on my journey and thought that there was a lot of positivity there. So I appreciate you saying that.

00:26:21 Mary

Yeah, 'cause, that's what I've always seen. And what I always was very impressed by. Because y'all don't know this about me, but Mindy does: I don't tolerate illnesses within myself very well.

00:26:35 Mindy

So true.

00:26:37 Mary

What do I often say to you? Oh, my body is mutining. (Is that a word?)  But your body has mutinied in a huge way.

00:26:40 Mindy

Yes.

00:26:44 Mary

And when I have a little sniffle, I'm probably more whiny than you are in daily life, so that's been humbling.

00:26:52 Mindy

Plus, you're not whiny, you're angry.

00:26:55 Mary

I am angry.

I'm working on it!

00:26:57 Mindy

You get angry at your body.

00:26:59 Mary

Working on it! So as we think about wrapping up, I have one more question for you.

What do wish everyone knew about autoimmune conditions?

00:27:07 Mindy

I want people to know that their condition can improve.

They can heal and there are many instances where people can get their autoimmune diseases into remission.

Am very close to being in remission from Hashimoto's disease. My antibodies are extremely low, and it's taken a lot of hard work, but it's possible if you're willing to put in the time and the effort and follow a low inflammatory diet.

Yeah, you can make it happen. Don't let anybody tell you that it's chronic and that you're going to be sick for the rest of your life. You don't have to live sick.

00:27:41 Mary

Yeah. And when I think about things like menopause, you know that's chronic. Once you get to a certain point, you need to make changes. We have learned –  and if you haven't hit menopause yet, you'll learn – you're going to need to do things differently.

As we get older, we have to manage movement differently, food differently. It's all these things that we can't just indulge what we want. And I think you learned that in a very hard way.

But one of the things I would add that I wish people knew was that you can’t always see it, and in situations like a work environment, women naturally tend to take on more.

That's actually going to be a topic for a future episode – Invisible Labor.

I would love for people to recognize that they don't always know what someone is going through. We should be a source of support for each other as women. We all go through things that are hard, and we don't have to hide that and we don't have to pretend that we're OK when we're not.

So let's support each other and recognize that maybe you don't always know everything that's happening with someone.

00:28:59 Mary

Well, it was fun to talk to you.

I am so happy that you were my first guest, so thank you for joining us today and, because our immune system is one of the body's systems that is most impacted by nutrition, I have a link in the show notes to a checklist of 10 Tips to Improve Digestion (click here!) . Because small changes can start you on the road to feeling so much better. 

If you like what you heard today, follow, subscribe or leave a rating or review. And until we talk again, go out into the world and be the resilient, vibrant Violet that you are.