Transcript:

Dan Neuffer: I’m very excited to have another recovery interview today.

Today, I’m speaking with Kari from the US. Thanks for coming on to share your story, Kari!

Kari: Thanks for having me! Nice to see you!

Dan: That’s great.

Kari, did you actually have CFS? Or did you have fibromyalgia? Or both?

Kari: It was CFS that I had.

Dan: How long ago did you first get sick?

Kari: It started in November of 1998 when I first got sick.

Dan: What were your first symptoms?

Kari: My first symptoms – the main symptoms were overwhelming exhaustion and then this constant light-headed dizzy feeling that wouldn’t go away – even when I was lying down, even when I was trying to sleep. Those were the two main symptoms I had. Any increase in exertion would completely deplete me, put me into bed for days at a time, and just completely overwhelming my body.

Dan: What happened? Did you go to the doctor?

Kari: Sure. See, I was in high school. I was a junior in high school. I was an athlete. I was always playing sports. It was actually my first day of basketball practice in my junior year and I collapsed on the court. I had gone from being what I thought was a completely healthy person – in good shape, at the top of my game, so to speak. Over the course of a matter of minutes, I was just completely overwhelmed by the exhaustion, the dizziness, the light-headedness. It was unlike anything I’d ever experienced before.

I collapsed and it took me six years to work back from that moment.

Dan: It’s funny how we have these moments where we suddenly realize something is drastically wrong. It clearly sounds like yours would have been quite a dramatic shock. Had you been feeling sick for a little while leading up to that basketball game?

Kari: No, and it was the first practice of the season. Nothing to that extent.

As I looked back on the experience, I thought back to my soccer season that had ended a few weeks before, and the weeks leading up to basketball. I remember feeling a little bit slower. I had to work a little bit harder at what I was doing, but nothing serious. I was pushing through it, and I was able to push through it, and it was nothing like what was to come.

I think there probably was a gradual slowing down, but it wasn’t anything that alarmed me.

Dan: You could just push through it until you got to a point where you couldn’t push through.

Kari: Right. It just felt like something broke, yes.

Dan: Can you tell me, Kari, what did the doctor say?

Kari: We didn’t have answers for a long time. I spent pretty much the rest of that schoolyear doctor to doctor, labs, tests, trying to figure out what was going on. It became a game of ruling everything out. You know, all the tests were coming back negative. We just didn’t have answers.

I started seeing a psychiatrist and a psychologist because people were starting to think maybe it was just depression – not to minimise depression or anything like that – or maybe it was all in my head because the tests were coming back negative. It was framed to me sort of as having someone to talk to and have support, so I went.

The psychiatrist put me on a couple of medicines to boost me up. I had started taking Zoloft – the antidepressant – and Lorazepam for sleep. They helped – not with my symptoms, but to give me a little bit of help sleeping. Certainly, the Lorazepam helped me to be able to sleep because, up to that point, I really wasn’t able to sleep well at all. You know, you’re constantly dizzy and you’re so tired, but you just can’t get that rest.

Dan: Yes.

It sounds like you had a whole lot of symptoms besides the tiredness and exhaustion. There was sleeplessness. Did you have other physical and mental symptoms?

Kari: Well, the dizziness, light-headedness, and exhaustion certainly were the two biggest. It’s funny when I think back to those years because it’s hard to remember a lot of it. It was such a blur.

Dan: It becomes a blur. I know what you mean.

Kari: It does become a blur.

You hear a lot of times about how it affects your brain and your mental functioning. I probably did have some of that. It’s hard to know because you feel so awful. You’re just suffering and everything’s different.

Dan: You feel so sick that you’re not doing enough to know that your brain’s not working properly because you never even get to that point, do you?

Kari: Right. Exactly. You can’t see very far in front of you.

Dan: You said you also had the dizziness.

Kari: Yes.

Dan: I imagine that’s especially upon rising. Would that be true? Like, when you’re standing up?

Kari: Yes, but it was that feeling all the time.

Dan: Did you have any problems with your gut?

Kari: You know, I did, but I never put it together until later on. No one had ever put those together, and I didn’t put them together, but I did have issues with that, yes.

Dan: Were there any other symptoms that you can think of as well around that time that you might have experienced? Did you have any strange, really weird things that you didn’t want to tell the doctor because you felt embarrassed?

Kari: No, not that I remember. I was just so overwhelmed by the dizziness and exhaustion.

Dan: That was enough.

Kari: Yes. Like I said, anything else I was feeling was so secondary.

Dan: It didn’t matter.

Kari: It didn’t bother me as much, yes.

Dan: Kari, did anything happen in the lead-up to you getting ill like this? If we think about the 18 months before that, were there any big physical or life or sporting or emotional events?

Kari: That’s a good question.

Life was busy. My mom – a year or two before – had been diagnosed with breast cancer. She was ill and I had watched her go through the chemo and the radiation, so that was probably the biggest upheaval, I guess, in my life that time, but she recovered, and she was okay.

Dan: Was that a big shock for you?

Kari: Yes, it was.

Dan: Tell me, from there on, did you get a diagnosis early on? Did your illness get worse? Did it get better? What happened after that year?

Kari: Well, it was still the same year. This was my junior year of high school. Coming into the spring towards the end of that year, I went to see the next doctor because I’d just go on to the next doctor, on to the next doctor, so I was meeting with a new doctor.

I sat in the office. He reviewed my whole work-up, looked at the calendar, and went over these symptoms I was having that were very consistent and said, “Well, you’re coming right up on that six-month period.”

He says, “I think it’s one of two things – it’s either fibromyalgia or chronic fatigue syndrome – because you’ve ruled everything out, and these symptoms have been happening consistently.” I hadn’t heard of either one.

I said, “Fibromyalgia? That sounds scary and terrible. Chronic fatigue syndrome? That sounds like a joke.” That was my first thought, you know. He asked me about pain – muscular pain and that sort of thing. Luckily, that’s not something that was part of my illness.

He tested parts of my body to see if I had pain or tenderness, and I didn’t, so that was ruling out the fibromyalgia, I guess. That’s when all I was left with was the chronic fatigue syndrome. That’s how we arrived at that.

Dan: What happened from there? Did you get more symptoms? Did the symptoms start to wear off?

Kari: Well, it’s interesting because they kind of put a plan in motion that really turned things around for me. I think I got kind of lucky. Let’s see.

I was put into a physical therapy program at the local hospital which I was excited about. I mean, I was used to being active, and I wanted to see what I could do. They wanted me to just gradually increase exertion to see how my body would handle it. It helped me get stronger, I guess.

Pretty soon into the program, we found a physical marker or identified a physical marker to the dizziness which was huge. Up to this point, we hadn’t had any physical sign that anything was wrong, but we had come to find out my blood pressure was dropping significantly with any type of exercise or exertion instead of rising. I think I cried when we found that.

Dan: You weren’t making it up after all.

Kari: Exactly. It’s sad that you have to get to that point, but I had spent a lot of time trying to explain to other people what I was dealing with and not being able to fully understand it myself. Having that physical proof was like a weight off. That was a big turning point, I guess, you could say.

Dan: Great to get that validation, isn’t it?

Kari: Yes, so that was one piece that was really great news.

I was actually invited to participate in a study. I’m not sure of the overarching goal of the study, but I know part of it was studying chronic fatigue syndrome patients. It was a new study out of Boston Children’s Hospital which is a wonderful hospital not too far from where I live. It was this new study. I was probably one of the first ones to participate.

I was invited to go down to Boston for a couple of days with my parents. For two days, I met with a team of doctors and psychiatrists. I went through a lot of the same tests and lab work that I had been through before, but I got to share the story of my illness in what felt like a really meaningful way.

At the time, I don’t think I even appreciated that opportunity as much. I mean, how many people get that chance? At the time, I think it was just, you know, more doctors. I was so sick of doctors. But, looking back, I know how lucky I was.

I went to through this study, and one of the lead doctors – a cardiologist – actually took me on as a patient, so I started making regular trips down to Boston. He told me that the drop in blood pressure was called neurally mediated hypotension and put me on a medicine for that. That went a long way in helping me recover, actually.

Dan: Did you continue with your increase in exercise?

Kari: You know what? It was a short-lived thing. I was still struggling. I can’t remember exactly why I stopped, but I didn’t do it for that long. At the time, I was only managing a couple of stairs at a time.

Dan: Did you find it was making it worse and giving you setbacks and flareups?

Kari: Yes. I mean, I wasn’t able to do much, so I think that was probably part of it, yes.

Dan: How long were you then sick? This helped, obviously – some of the medication to help you with the hypotension. Did you do anything else? Did you continue to see a psychologist as well?

Kari: I don’t think I did.

Dan: After you got that physical?

Kari: Yes, after I went through the study and all of that.

Dan: What happened next?

Kari: Now, I’m into my senior year of high school. In junior year, I was very on and off at school. There were periods of time when I was just in bed, and I couldn’t really get out of bed. When I was strong enough, I would go to school because it was so important to me to have that structure and the familiarity.

The psychologist had actually brought up the idea of dropping out or taking time off, and that scared me more than a lot of other things because it was really the centre of my universe, I guess, at that age, and I didn’t want to lose that.

Junior year was tough for me. I would drag myself to class if I didn’t go to the nurse’s office and have to go home. Junior year, I was keeping my head on the desk in class and listening, but that was about all I could do.

In senior year, I looked much more like a normal person. You know, I was able to get myself to class much more regularly and have my head up, participating more in class, and I think it was the medicine, actually. It was Midodrine that I was taking. It would keep my blood pressure at a high level. That’s when I felt the best – when my blood pressure was very, very high.

I made it through senior year. I wasn’t able to play sports again in high school, but I graduated. I graduated on time. And then, I went off to college with my medicine and my fears of going backwards.

The funny thing is that the college I had chosen, in a large part, was because of the basketball coach. I mean, basketball was a huge love for me, and the fact that I had that taken away from me so dramatically and quickly was hard for me.

And so, in high school, there were a few coaches who were recruiting me to play. As I was ill for longer and longer, the coaches stopped getting in touch and contacting me, but I had one coach left, and he had pretty much told me, “I’ll wait for you to be better. I’ll wait for you to be well. You have a spot on the team.”

Dan: That’s nice.

Kari: Hearing that, I mean, he believed in me. And so, I went to that school with the thought that I would try – you know, I would try to see what I could do on the team. I wasn’t able to play, ultimately. I just wasn’t there physically. I wasn’t well enough, but that was why I went to that college. It’s kind of funny.

Once I finally gave up basketball totally, it allowed me to settle into more of a simple, quiet routine – getting to class. Once I gave up sports, it was less about explaining myself to people – you know, “Why aren’t I playing? Why am I sitting on the bench?” I hated it. I hated talking about the illness.

Dan: You started to rest more, I suppose, because you weren’t pushing yourself.

Kari: Yes.

Dan: At the same time, you weren’t talking so much about the illness because you didn’t have to keep explaining yourself.

Kari: Right. Exactly. It wasn’t forefront in my mind and my routine. Exactly.

Dan: You were able to concentrate more on your studies and things, I guess.

Kari: Right.

Dan: What happened then?

Kari: I guess you would say that, during the next three and a half years or so of college, I was doing that. I was just trying to be normal. Eventually, I got to the point where I felt like I wasn’t living so much with an illness, and that I was just living.

I think it took me probably up to senior year to feel that way. It was very gradual, but I just started feeling stronger, and I’d have strength of days where I felt normal, and I didn’t have the dizziness. I wouldn’t be getting tired like I used to, and I started having blocks of time.

Actually, with my doctor’s okay, I told them I wanted to try tapering off the medicine because I was constantly checking my blood pressure. The blood pressure was elevated with the medicine. Even when I was trying to do a little bit more activity – like, walking around campus – the combination of the medicine and the activity would put me almost to unsafe levels at times.

I had to go to the emergency room a couple of years in college because it was so high. I didn’t want to always be relying on that, so I gradually tapered off of the medicine very slowly, and I was so happy when I was able to do that.

Dan: It sounds like you made a gradual improvement.

Kari: Yes.

Dan: When did you come to a point where you go, “Maybe I’m no longer sick”? How long was that after you first got sick?

Kari: Six years. About six years it took me.

Dan: Were you scared to say that you were no longer sick? Did you think you might get struck down by lightning?

Kari: Well, I was scared of relapse for a long time – very long. It’s been a little over ten years since I would consider myself free of this. For probably five or six years, I was very scared of doing anything and just relapsing, but the timing was so funny because I was tapering off this medicine as I was getting ready to graduate and go off into the real world and get a job.

I graduated in the spring of ’04. I actually graduated at the top of my college class.

Dan: Well done! Congratulations!

Kari: Thank you!

I was lucky enough to receive several awards. After all I had been through, getting to that point and being back in high school and thinking about, “Maybe I should drop out?” it was definitely a balance of knowing when to stop and when to keep going. I got lucky, too. I think I got lucky with the doctor I ended up with and the medicine working for me. I know everyone’s different on what they respond to.

I had a good experience finishing up with college. I got a great job opportunity after graduation. Off I went. Soon after I graduated, I was not on the medicine anymore. I was scared, but I wanted to try, and I was okay.

Dan: Great. Did you do anything else that contributed to your recovery?

Kari: What do you mean? Is there anything specific you mean?

Dan: If you think about those six years in total – obviously, you started taking that medicine, you stopped playing sports, stopped pushing yourself so hard, not having to explain yourself and talk about the illness – what other factors do you think may have contributed to your recovery? Did you play any other strategies? Did you try any other treatments? Did you change your life in any other way?

Kari: I mean, I didn’t really try any other treatments. I remember when I was first diagnosed, I wanted to read about chronic fatigue syndrome. I wanted to know more. The more I read, the less I wanted to know about chronic fatigue because I couldn’t have it in my head that I might not recover. It was too much.

I was young and I felt like I had everything in front of me. And then, this happened, and I couldn’t see beyond the next couple of days. The thought of living with it my whole life was too much, so I stopped reading.

I remember having a conversation with my mom about it. “Don’t think that way. That might not necessarily be your story.” That was something I stopped doing, I guess, that helped – just staying positive about it which is so hard to do.

Another thing I think was being able to leave high school and have a new setting. You know, it was hard for me in high school because – for my basketball team in particular – there was a lot of expectation for me on team. When people found out I wasn’t playing, it became a story and a focus. The local paper – junior and senior year – would cover my illness and the coverage of the team. It was interesting.

It became a focus. It was hard for some of my teammates and there were people who didn’t believe that I was sick and that I was doing it for attention. That crushed me. That was another element to this that I was dealing with – defending what I was going through. No one should have to do that when they feel so sick.

Dan: Absolutely.

Kari: At least in college, when I was having to explain things, it didn’t seem as personal.

Dan: Because it’s fresh. Nobody knows you.

Kari: Right. Well, that’s the other thing.

Dan: “Here comes Kari. What’s Kari about? Kari is not about being sick and not playing basketball. Kari is about whatever she says she’s about.”

Kari: Yes.

Dan: It’s like you’re a new person again, isn’t it?

Kari: Yes. I mean, there were so many identity issues, I think. The loss of control you feel. Yes, I think the change in scenery definitely helped. I don’t know. It’s not easy. Wherever you are, it’s not easy.

Dan: I know.

Kari, let me ask you, what is your personal opinion about what causes the illness and why people get this illness and why they recover?

Kari: Wow.

Dan: Before you answer this, have you actually read my book or anything like that?

Kari: No. I mean, you, it’s all still so new to me.

Dan: That’s great. I just wanted to check. We’re getting pure unadulterated opinion here, so I’m curious to see what we get.

Kari: I’ll just start by saying that it’s still a mystery to me. I have just as many questions now as answers, and I’ve always been confused about what it was I went through because the doctors were so confused.

At first, I thought it was burnout because I didn’t know. I mean, there was no explanation for why everything happened so suddenly, so I thought it was burnout. It was funny because my mom would come to the appointments with me, and she’d have all these theories about what was going on – just wacky things.

She just grasped at straws, and I didn’t know what to believe. I was thinking maybe burnout. Then, you hear the virus theory – Epstein-Barr and what-not. When I was diagnosed, that was going around. That theory was out there.

I don’t know. I really don’t know.

Dan: That’s fine. Look, the main thing is that you’re recovered and that you’re a shining example that life can go on and we can get our life back. It might not happen necessarily for everyone overnight.

I think it’s such a powerful message too about sharing the impact it has when people don’t believe you’re sick and have these symptoms. I think it’s such an awful thing. You’re not the first person, I think, who has burst into tears when there was finally some physical proof.

Kari: Right.

Dan: The problem really isn’t the fact that we can’t see what’s wrong. The problem is that we’re doing the wrong tests. Actually, the test you mentioned is a very classic test. If it was up to me, that would actually be one of the main tests to do. In fact, I think you would probably see some of that – even as people recover – we still see some of that dysfunction. I actually saw that in myself as well. It’s a very insightful test.

Is there any advice that you’d like to give to anyone listening? Is there anything you’d like to say?

Kari: I just want to say that suffering is hard, the mystery of it is hard, and the stigma of illness is hard.

Having people around you that support you goes a long way in aiding with those hard things. For me, having my family and my boyfriend at the time – who I’m now married to – and my doctor, the cardiologist – you know, those were my support. That was my support system. I would just say find those people. Find your support.

Dan: Yes, thank you. Wise words.

Kari, thank you so much for bringing hope to other people. I really appreciate you. I know it’s not easy talking about some of those years, and I know it can take a lot. It’s not just because we’re talking about our deepest fears and our deepest feelings, but it’s clearly an unpleasant experience that we don’t really want to relive, so I know what it takes to talk about it, and I want to say thank you very much for sharing your story.

Kari: Thanks for having me. Thanks so much.