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Welcome to The Autoimmune Wellness Podcast Season 2! We’ve created this podcast as a free resource to accompany our book, The Autoimmune Wellness Handbook: A DIY Guide to Living Well with Chronic Illness.

Season 2 Episode 4 is all about how to start the work and begin healing, even without a diagnosis. It’s our second interview episode of the season and in it, Angie sits down with her friend Stacy Smith to discuss how Stacy has managed an unidentified autoimmune condition for nearly 20 years.

Angie and Stacy dig into how Stacy came to terms with her condition, how she went from vegan fitness competitor to AIPer, how to find your “best fit” doctor, steps toward self-empowerment, and much more. Scroll down for the full episode transcript.

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Mickey Trescott: Welcome to the Autoimmune Wellness podcast, a complimentary resource for those on the road to recovery. I’m Mickey Trescott, a nutritional therapy practitioner living well with autoimmune disease in Oregon. I’ve got both Hashimoto’s and Celiac disease.

Angie Alt: And I’m Angie Alt, a certified health coach and nutritional therapy consultant, also living well with autoimmune disease in Maryland. I have endometriosis, lichen sclerosis, and Celiac disease. After recovering our health by combining the best of conventional medicine with effective and natural dietary and lifestyle interventions, Mickey and I started blogging at www.Autimmune-Paleo.com, where our collective mission is seeking wellness and building community.

Mickey Trescott: This podcast is sponsored by The Autoimmune Wellness Handbook; our co-authored guide to living well with chronic illness. We saw the need for a comprehensive resource that goes beyond nutrition to connect savvy patients, just like you, to the resources they need to achieve vibrant health. Through the use of self assessments, checklists, handy guides and templates, you get to experience the joy of discovery; finding out which areas to prioritize on your healing journey. Pick up a copy wherever books are sold.

Angie Alt: A quick disclaimer: The content in this podcast is intended as general information only, and is not to be substituted for medical advice, diagnosis, or treatment. Onto the podcast!

Topics:

Angie Alt: Hi everyone! Welcome back to Autoimmune Wellness podcast season 2. This is Angie, and today I’m interviewing Stacy Smith of Viridis Wellness, LLC. She is a fellow nutritional therapy consultant, and an Instagrammer extraordinaire. If you are not following her at Viridis Wellness on Instagram; you should definitely pop in there. She shares beautiful, very informative posts on the daily. She’s a much better Instagrammer than I am.

We have gotten a lot of feedback that you guys find it helpful to hear from folks who have taken on the healing journey in real life. So today, we’re going to be sharing a little bit of Stacy’s story. Thank you, Stacy, for joining us from the Midwest. Are you ready to get started?

Stacy Smith: I am. Hey Angie, how’s it going to day?

Angie Alt: It is going pretty good. There’s always way too much to do in life.

Stacy Smith: So true.

Angie Alt: But I am managing it somehow. {laughs}

Stacy Smith: So true.

Angie Alt: So, let’s just jump right in. I think it’s always good for folks to kind of tell their diagnosis story, and to kind of share what that part of the journey was like. One of our first questions that we always ask people is, what was the first symptom you noticed of your autoimmune disease? What was the first thing that popped up that made you go; “Hmm. I better investigate this?”

Stacy Smith: Something’s not right?

Angie Alt: Yeah.

Stacy Smith: Yeah. In my case, that would be harkening all the way back to 1998, when I moved to the Midwest from California. My first symptom was definitely severe fatigue, and that’s the one that I’m still working on today, many years later.

Angie Alt: Ok. Ok. Yeah, there should be a total different word to describe fatigue when it’s autoimmune fatigue. It’s on a whole other level.

Stacy Smith: Absolutely. So that should be the word that we make up this year.

Angie Alt: Right. {laughs}

Stacy Smith: {laughs}

Angie Alt: The word of 2017.

Stacy Smith: That’s right. That’s right. So yes; I went from being very healthy, very active at age 20, to completely debilitated, couldn’t get out of bed, and that was definitely tough at the time.

Angie Alt: Yeah. Ok. How long did it take, from noticing that first system, that really extreme fatigue, until you got an actual diagnosis?

Stacy Smith: You know, I still don’t have a diagnosis to this day. So I would say that that level of fatigue waxed and waned between 1998 and 2013. I would call that my silent autoimmunity period, which was quite long. And in 2013, I had this constellation of events happen in my life all at the same time. I switched jobs, I was working 80 hours a week at a very fast paced finance firm. I had someone in my family with whom I was close pass away. I had some issues in my relationship. I was training to compete in fitness; so I would say I really kind of pulled the trigger on the autoimmunity at that time; became very ill. I saw three different rheumatologists at the time. One told me, “You definitely have lupus.” One said, “You absolutely do not have lupus.” And another said, “You have undifferentiated connective tissue disease, which will probably turn into lupus.”

So with lupus, as with many autoimmune diseases, it’s obviously very common to take an extraordinarily long time to reach a diagnosis, and to receive conflicting information along the way. So, just the past month, I have been seeking out additional information. Decided I was going to find a new rheumatologist; interviewed several, and was told again, by one, “You definitely have lupus.” By the second one, “You definitely do not have lupus.” By the third one, “You may or may not have lupus, but you may have an unusual presentation of some other thing, such as ankylosing spondylitis or psoriasis, or psoriatic arthritis; a couple of other possibilities.”

So, long story short, a couple of decades in, still no diagnosis.

Angie Alt: Yeah; this is a really hard one for us. And part of the reason that I chose to interview you today, because I really wanted to share with the audience; which I know there are many of them out there just like you, that sometimes getting a diagnosis is a very long journey, a very protracted journey for a lot of us. And sometimes we’re starting the work of healing before we’re even 100% sure what we’re dealing with. For some of us, that may never come. And you’re a really great example of somebody who is persevering despite not having that information yet.

Stacy Smith: Right. One of the; I would almost say it’s a benefit of the autoimmune situation, is that there are certain things. Even if you don’t have a diagnosis, there are certain commonalities; quite a few of them, that can yield improvement for almost everyone. And diet, specifically AIP in this case, has been extraordinarily helpful for me. So even though I don’t have a diagnosis, I have a suspected diagnosis of lupus, which may or may not be the case. There are still things I can do to improve my situation, and that’s what I’ve been focusing on, while also trying to figure out exactly what it is that’s going on with me.

Angie Alt: So, one of the questions that we often ask folks is about their experience coping with the disease, and how they felt when they were diagnosed. Obviously, you don’t have that piece of the story, but how do you feel not having that diagnosis?

Stacy Smith: Well, you know, I felt like I had that diagnosis, honestly. I spent several years identifying as part of the lupus community. And I still do, to a large point. That first doctor that I saw is the one that I stuck with, and to quote him, he said that my presentation was very likely to develop into the type of lupus where your kidneys are involved, and that I should expect to pass away from kidney disease. That was very clear-cut to me, regardless of what the others said. That was going from being a very healthy person with having no; I certainly hadn’t accepted that whatever was going on with me would possibly be life-threatening, because it had been going on for 15 years. Honestly, my thought was, “Whatever is going on with me is not life-threatening, or I wouldn’t still be here 15 years later.”

So for him to tell me that was honestly devastating. I would say that at the time I did not cope very well with my diagnosis. And it was one of those things that really took hitting rock bottom, and starting to pull yourself out over an extended period of time.

Angie Alt: Yeah. Yeah. You know, not every autoimmune disease that’s out there is quite so aggressive, or necessarily life-threatening. Certainly, it diminishes quality of life, but there are some that are really aggressive, and it’s scary to face a diagnosis like that. I can certainly understand that initially trying to cope with being told that this might be what’s happening must have been really tough.

Stacy Smith: Yes, and he didn’t have any doubt in his mind, and the way that he portrayed it. And my doubt has come since then with the more information that I gather, and the more educated I become, and the more that I advocate for myself. I question whether or not that’s really what’s going on, or if it isn’t something more unusual. So, regardless, it certainly has impacted my quality of life. But at this point, the wondering what is going on is driving me a little bit crazy.

Angie Alt: {laughs} Yeah.

Stacy Smith: {laughs} So. I’m putting a lot of energy into trying to get that answer, while at the same time trying to cultivate an acceptance that I may never actually achieve that.

Angie Alt: Right. Right. Tell us about how your friends and family have handled your walk with chronic illness. Whatever we’re working with here. Have they been a source of support and strength for you?

Stacy Smith: You know, I found honestly that most of my friends did not understand what was happening at all. And I found that the most useful thing I could do was actually create new friendships with a different kind of people who got it. So I would encourage anyone who is finding that they don’t have the level of support that they need to be successful in their journey, in their life as it sits now, to consider releasing some of those relationships and building new and better ones.

Angie Alt: That’s such good advice {laughs}.

Stacy Smith: Go ahead?

Angie Alt: That’s such good advice.

Stacy Smith: You know, it’s hard. You want people to accept you as you are, but at some point, if they don’t, then you know what, that’s on them. And just let it go, and create a new community of people who are supportive. Because I think; as you know very well; connection is a critical piece of being able to manage your autoimmunity. Luckily, I did have someone in my life who was very understanding and supportive, and is to this day, and that is my boyfriend. He has been with me from the beginning, and really unshakeable in his support. I was a very different person when we met, with very different capabilities than I am now, and he just won’t quit. And on the days that I feel like quitting, he won’t let me quit. So I’m very thankful for him. He’s been a blessing.

Angie Alt: Aww. That’s great. That’s great to have that one rock-solid supporter. That’s my husband, too. So, let’s backtrack a little bit. When you first learned that what you could possibly be dealing with, and we realize this is an ongoing investigation for you.

Stacy Smith: Right.

Angie Alt: But when you first learned that what you could be dealing with was an autoimmune disease, what did you think about autoimmune disease? Was that something that you knew about prior, or was it like; “Oh my gosh, I didn’t even know that these existed?”

Stacy Smith: Well, during the period from when I first, let’s say got sick, to when I had a “diagnosis” in 2013, I had been to what felt like every doctor on the planet. Every specialty trying to get to the bottom of this. And I had been told that based on my very vague symptoms of fatigue, and my family history, that it was probably some form of autoimmune disease. Which was not rearing its ugly head to the point where it was observable with typical labs yet. So I was somewhat prepared. I thought at the time; my mother has a wide variety of autoimmune diseases, unfortunately, and so do many of the women in my family. So, I knew that it was possible. But what I didn’t do, unfortunately, that I would like to encourage anyone who maybe doesn’t have a diagnosis yet, and has this really precious window in which to do something, is to educate yourself now and take preemptive steps before something happens.

So, I had an early tip. And I didn’t utilize it. Which is spilled milk now, but I wish that I had known now what I did then, or I wish that I had known then what I do now. Excuse me. As many of us do. Because I did have sort of a wasted opportunity there to do something about it. So, I kind of knew it was coming, but didn’t really understand how it worked. My family had only ever used conventional medical treatment, and had more of a conventional thought process as to what autoimmune disease was.

Angie Alt: Mm-hmm. So it was making that leap. Maybe it was too early in your journey to know you should have made it. But I think all of us who chose other routes initially wish we could go back and put some of this diet and lifestyle stuff in place sooner.

Stacy Smith: Right, right. Exactly. Because traditional medicine is so much more focused on, “We’re going to wait until you are severely ill before we try and put a Band-Aid on it.” I really didn’t receive a message of, “Hey, this is what you can do now.” So that’s something that I like to try to educate others on today, hoping that maybe someone out there will hear the message and take the opportunity if it’s presented to them.

Angie Alt: Right. Right. So in that initial health care experience, it sounds like at first maybe you didn’t really react one way or the other. But then you may have started out trying to follow some conventional routes to dealing with the problem.

Stacy Smith: Yeah.

Angie Alt: So, there were obviously some doctors along the way. And folks you’re still probably working with. How did you find your best and most helpful doctor? This is such a tough one for those of us in the autoimmune community to find doctors that are really great people to have on our team. So how did you find your best and most helpful doctor?

Stacy Smith: You know; I would say that I’m still doing that now. I have had a difficult relationship with most of the physicians who are on my team. I am just; my goal for Q1 of this year has been to find a new rheumatology relationship, and I think I’ve found her. I spent a lot of time interviewing, and I found someone with whom I’m really comfortable. But it took a lot of advocacy on my part, and going in with the attitude of, “I’m interviewing you. I’m looking for the right partner for me,” and being willing to...