“To live with” explores the contours of living with a chronic illness, from prelude to diagnosis to new lifestyles, including big questions about illness and health.
A Just under 10 years ago, Leigh Krauss had almost finished her studies to become a physical therapist. A former guard for the women’s basketball team at Trinity College in Hartford, Connecticut, she has always been active and healthy. That is to say, one day, on her way to class, she lost sight in one eye.
Krauss was soon diagnosed with multiple sclerosis, a chronic autoimmune disease where problems in the nervous system cause a disconnect between the brain and the body.
As she learned to manage her own illness in her mid-twenties, Krauss simultaneously learned to treat her physical therapy patients, whose lives were also being reshaped by the illness.
“To see people in those positions, that empathy and compassion goes to another level, because I really remember what it was like,” she said. “It’s like a full circle for me to be able to help people who wear shoes I was in too.”
Now 34 and a physical therapist at Stanford Health Care, Krauss serves on the board of the National Multiple Sclerosis Society, which funds research, lobbies health policy legislators and connects patients with SEP to resources. Krauss is also married, a new parent, and cares for a large number of patients.
STAT spoke with her about life as a professional working with a chronic illness and how her diagnosis of multiple sclerosis nearly a decade ago changed the way she approaches her patients.
Can you take me back to that day when you lost sight in one eye? What went through your head? I guess you had to go to the hospital.
Actually, I didn’t go to the hospital. That should tell you a lot about me, one of which is that I’m stubborn. I was like, “Oh, that’s probably my contact.” I very often have fuzzy contacts. So I went home, took it out, put on glasses. Still blurry. It’s confusing because it’s not like your eye suddenly sees black. It’s almost like a spider’s web – you can’t see anything but you can see shapes. Didn’t go away after a week. And then I was in the shower shaving and noticed that the razor was really different on my right leg compared to my left leg, almost like you were skiing and your leg was a little numb and that ‘she thaws out. It was just dull.
I went to the eye doctor and he said, I don’t know what’s going on, but I know something is going on that’s basically above my pay grade. And he referred me to a retina specialist. Same thing. Then, finally, I got a referral for a neurologist. And all the time, I’m thinking, “It’s nothing,” but also Googling, freaking out. At 25, especially for me, if nothing ever happened with you guys and you have that athlete mentality, I felt like I was pretty stubborn. And then I went to one of my teachers and said this thing to her and the look on her face worried me because she was clearly like, “Something’s wrong.”
It’s a lot like the push through pain mentality of the athlete.
Yeah, which isn’t the most helpful thing with a chronic illness. You can’t really get through. So I went to see a neurologist and it was like a three hour appointment, they do all these crazy tests. And the doctor has this resident next to him and they nod. And the weirdest part about it is that I’m also in physiotherapy school, we also do neuro exams and we were at the neuro point in our studies. So I knew full well what a neurological exam looked like and what my own test results were. And I panicked inside.
And I’ll never forget this guy because he was so flat, like in a funny way. And he just walks into the room, no bedside manner, which was fine, I preferred the simplicity anyway. He says: “I am 90% sure that you have signs of multiple sclerosis in the brain and two levels of the spinal cord. And we’re going to send you to the hospital right away. You should call someone.
Wow. How well did you know about multiple sclerosis at that time?
We covered it at school. But as I learned, it looks very different on everyone. My whole experience with it was not great. When I was first diagnosed it was very alarming and scary the way it was presented. It doesn’t look like what I have now, which is a lot of hope for the future.
What happened after you went to the hospital?
They immediately put me on very high doses of steroids. These five days, more than anything, have changed my life so much because steroids are a roller coaster. I’m a very balanced person and they send you then back down. And they also immediately make you gain all that water weight. It disturbed my mind a lot because there were so many changes happening so fast.
With school, I said: “If I’m absent, I’m not sure I’ll finish one day. So I kind of pushed through, but it was really tough six months to a year of trying to stabilize everything. I regained sight in one eye, then lost the other eye. Everything was really out of control for the first year, which I learned is pretty normal as your body adjusts to living with the disease.
It’s weird to say I’m lucky, but I’ll say I’m lucky to live in this time because the very first MS drug was discovered, I think, in 1993. And now , there are more than 20. When I was diagnosed nine years ago, there were 10.
How does your diagnosis change your philosophy, the way you approach your work?
All the people I work with are incredibly empathetic and compassionate people, but they also don’t know what it’s like to be in the hospital, on all these crazy drugs.
It’s really hard to explain to someone who doesn’t know what chronic fatigue looks like. It’s something I’ve never experienced in my life [before MS]. I mean, even sleepless nights for finals, jet lag, hangovers, just don’t compare to what fatigue looks and feels like. So there’s just a level of understanding that helps guide my clinical practice that’s super, super helpful with a lot of different patients, because chronic fatigue affects so many people that I see on a daily basis.
Can you give specific examples of adjustments you make or questions you ask that are informed by your own experience with MS?
I know how fatigue works for me. It’s a wall you’re hitting. You can’t cross (I tried, I tried the first few years and you just can’t). So the rest lasts a very long time, even if it is only five minutes. Rest can help rebuild and recharge your battery so much that you can then continue exercising.
I’m gonna be like, OK, let’s back off, we’ll do a couple, we’ll take a break and see how we feel. Specifically, people with MS are really triggered by the heat. So if you’re working with someone with MS and they’re too hot, ice packs can be helpful. But also the simple act of cooling their internal temperature can allow them to go on and do much more.
What is one thing your newly diagnosed 25-year-old could have really benefited from hearing?
I guess stubbornness got me far and I didn’t give up. But I wish I understood the importance of slowing down, because that doesn’t mean you stop.
I think if I had had more examples of really successful people, doing really well – even in their love lives, married, having kids, doing well professionally, still going strong – it would have given me a lot more hope I had at that time.
Want to share your story of living with a chronic illness? E-mail [email protected].
STAT’s coverage of chronic conditions is supported by a grant of Bloomberg Philanthropies. Our financial support are not involved in decisions about our journalism.
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