Cindy Kennedy, FNP, discusses Lyme disease and the gifts of chronic illness with licensed psychotherapist Ruschelle Khanna, LCSW. Khanna shares her personal Lyme journey and how she has been able to thrive despite her illness. Khanna reveals the gifts that she has found from living with Lyme disease, and how she now helps others suffering with Lyme to find emotional healing.Khanna is a Lyme-literate psychotherapist in private practice in Midtown Manhattan. For over 15 years she has assisted thousands of individuals and families in overcoming depression, anxiety and severe mood disorders. Through her personal experience of Lyme disease she assists clients and audiences in accessing the possibility of awakening through illness and pain. Khanna is the founder of the Fibromyalgia Summit Online and has written two books on spirituality and chronic illness. Her current project is to educate 10,000 mental health clinicians in understanding the impact of Lyme disease on mental health and quality of life.
Transcript of Episode 16: The Gifts of Chronic Illness
Cindy: Welcome, everybody. This is Cindy Kennedy, and you’re listening to Living with Lyme. We have a licensed social worker on the line with us today. She is Ruschelle Khanna. She’s very Lyme literate as a psychotherapist, and she’s in private practice in Midtown Manhattan. She herself has and still is suffering from Lyme Disease, and she’s been assisting for over 15 years many patients, individuals, families, and at that time, just their issues. Now, because of her Lyme Disease, she’s able to help more people, individuals, families, and certainly helping people adjust and get through their illness, understand their illness. She has a lot of information to give us today. So, I’d like to introduce to you Ruschelle Khanna. Hi, Ruschelle.
Ruschelle: Hi. Thank you for having me.
Cindy: Oh, this is an exceptional treat for me because I don’t often hear about therapists that are educated and have certainly experienced that Lyme dark tunnel. So, tell me a bit about yourself and how you became touched by this illness.
Ruschelle: So, I think for years, I was not particularly healthy. Through my twenties, I felt like I was doing lots of things right, or I was doing the best that I could, but I was still really struggling with things like anxiety. I had a lot of anxiety, severe insomnia. That was my twenties, and I think to be a twenty-something in New York, a lot of women are having anxiety and insomnia, so it seemed normal. Then, March 3rd of 2014, I was lifting weights. I lifted some really heavy weights that day. Weight lifting is pretty stressful on your central nervous system and your immune system. I felt a little funny, and then I came home and I ended up in nine days of seizures and inability to sleep or walk. I went through bouts of losing my hearing and my vision. I had severe neuropsychiatric symptoms that came really out of nowhere, at least I thought they came out of nowhere. It was a complete medical crisis. I thought that I was going to die.
Cindy: I would imagine.
Ruschelle: Yeah. I lost like 16 pounds pretty much right away. I was in the emergency room in and out, and everybody said I was fine. They kept sending me home, but clearly I wasn’t fine. So, that was the beginning. Lyme kind of came and hit me pretty hard.
Ruschelle: Was a pretty intense initial experience knowing that I had Lyme. Look, I could’ve had Lyme for many years or I could’ve contracted it recently. I don’t know. I never saw a tick site or a rash, but I know that down my journey of trying to figure out what was wrong with me, a Facebook group actually told me that I had Lyme Disease. I didn’t even know what Lyme Disease was.
Ruschelle: It was because of this group of people. I thought I had mercury poisoning. I had two mercury fillings. When I kept putting the symptoms in the computer, it said “mercury toxicity,” which I might have had as well, but those people in the mercury group said, “No hon, you have Lyme Disease. You need to go and be tested and get treated.” I did, and started feeling better, luckily, pretty soon after. That was my initial experience with Lyme Disease.
Cindy: Yeah, that’s a rough one, especially because of your symptoms. It must’ve knocked you through a loop and probably affected your relationships as well as being able to work.
Ruschelle: Yes. No, I definitely wasn’t working. I definitely had to stop working, and in terms of my relationships, and this is one of the things that I really think is left out of Lye Disease treatment on two fronts: one part of it was that I was psychiatrically not capable of being with people the same way. I think a lot of people who have Lyme would say or understand. I had personality changes. I had changes in the ability to experience emotions the same. I had difficulty relating. A lot of people experience what they consider PTSD. Those things were happening, and that made it difficult. Then there was a layer of severe memory loss. There were times when I didn’t recognize my husband when he came home. He would come home from work and I was terrified of this man coming in my home. It was almost like an experience of dementia.
Cindy: Oh my God. I’m sorry, I’m sorry. I guess some people are unaware. I’m sure most people are unaware of the severity that Lyme Disease can cause, and the impact on people’s lives. Obviously, this was horrendous for you.
Ruschelle: That is one of the main reasons why when I tell people what I do, I start off by saying, “My primary responsibility is to keep people safe.” I think people really underestimate the internal world of someone with Lyme Disease. They underestimate the risk of suicide and homicidality that is caused by systemic infection. I was open enough and educated enough from my background as a therapist to know that I needed to tell people, “Look, I’m having moments when I don’t recognize my husband. I’m having moments when I feel like I don’t want to be here anymore.” I think for a lot of people, they would be embarrassed or ashamed or confused to tell people that they’re having these internal experiences. My primary job is to normalize this experience of where the mind can go when we have an infection or when we’re under tremendous stress.
Cindy: Right. I’m aware certainly the significance of neurologic Lyme and the ability of this infection to cross what we call the “blood brain barrier.” I’m saying that more for the listeners than you. I’m sure you’re quite aware of that. Getting antibiotics, getting treatment that will cross into that area and assist with demolishing this infection can be very difficult. Did you need IV antibiotics?
Ruschelle: This is the crazy thing about my situation: I didn’t know what IV antibiotics were. I was never treated with antibiotics; I went to a Chinese medicine doctor, and I was treated only with herbs. Now later after I worked in the field I collaborate with physicians and psychiatrists, anyone that I talked to said, “You needed a picc line immediately, but luckily, the herbs worked. Within a month and a half, my psychiatric symptoms were almost completely gone just off of Chinese medicine. Is that what I would recommend to people if they were as sick as me and they came into my office? Probably not. I would probably recommend them to my local neuro-Lyme doctor who I refer people to who does use antibiotics, at least initially. I didn’t know any better, so I went with the cheapest option-
Ruschelle: Nobody was helping me research doctors. My husband knows nothing about medicine or how to research. I was the person to do the research.
Cindy: Right, right. How did you do the research when you were so, you know, debilitated with this illness?
Ruschelle: Well, I had moments of lucidity. I spent a tremendous amount of time in prayer. For anyone who knows, I’m going to throw out a name of someone who I’m really appreciating these days. Jenny Rush. Jenny is a Lyme Disease coach, and she also wrote a wonderful book about healing, using illness as a way to spiritually heal. I knew right away that I was in a spiritual crisis and that this wasn’t, for me, about the physical illness. Now other people come to illness in many different ways, but for me, this was a spiritual transformation. My internal turmoil was used as a reflection and in a lot of prayer. Through those moments of clarity that I got through prayer, I was able to get back on the computer and keep looking. I knew that my life was worth getting better and that I couldn’t stay that way. It was kind of my dark knight of the [soul 10:27]. I’m really grateful for my Lyme experience. I don’t have any negativity toward how ill I was. I felt like it was a mode for me to be a better person.
Cindy: Did you have a really good support system through this? How did your husband handle this?
Ruschelle: So, my husband, I am extremely fortunate. My husband is really, really wonderful. He had no idea what was happening, and he played a solitary rock person in my life but not really a lot of technical help. He was really the only one. My family completely thought that I was just having a nervous breakdown. Not that they weren’t supportive, but they didn’t understand and they had no idea the severity of how ill I was.
Cindy: Do they understand now, in retrospect?
Ruschelle: I think they do, yeah. We’ve spent a lot of time learning, and they were open enough to learn about Lyme Disease. I know that I have two types of listeners out there: I have listeners who have supportive system and then listeners who don’t. I think for the people who don’t understand, then there’s a level of acceptance that I had to go through, which was, “You know, you’re just not my people right now. Maybe we can connect on another level at another time, but I’m not expecting that you understand because you’re not in that place where you can.” I kind of put my family on the back burner, and interacted with them only in a way that was healthy for me-
Cindy: That’s great.
Ruschelle: Boundaries were very, very important. I didn’t call my sister to talk about my Lyme Disease because she wasn’t going to get it. Actually, a new church community that I’ve become involved in was extremely supportive of me. I spent a lot of time in prayer asking for the support to come. That was my way, and they did. They came in abundance. I was directed to good doctors. I saw doctors who didn’t get it, and I just looked at them and said, “You know what? You’re not the doctor for me. Thank you for your time, but you told me who you were and you weren’t the one,” and I kept it moving.
Cindy: I think one of the problems is people get stuck, and they assume that if they stick it out a little bit longer that this provider is going to help them. You did the most valuable thing for your healing, was to say, “You’re not the one” and to move on. Now, how are people sent to you? How do you people know that you are very Lyme literate and provide this help, this psychotherapy for these people who are struggling so desperately?
Ruschelle: That’s my tagline anywhere I go, so I do spend a lot of time educating the community. I get referrals and work very closely with Lyme doctors here in the city, so when I say “psychotherapy,” I really mean functional psychotherapy. I use functional medicine. I try to be as literate with medical terminology as possible. I try to be educated about the providers that are around me in the community, and so when somebody comes to me, I have a host of resources and things that I want them to do outside of a psychotherapy office. We can work on their emotions, but I know and you know that psychotherapy is not going to get you better from Lyme. Collaboration is the way that I get my clients, and it’s the way that I work with my clients as well.
Cindy: What are the most common disabling facts that people are struggling emotionally with Lyme Disease?
Ruschelle: I’m seeing a lot of post-treatment trauma, medical trauma, any sort of anxiety disorder to the nth degree. That would look like not being able to leave your home, not being able to get back into your life. I do in-home visits here in the city to start for people who, maybe you’ve been on IV antibiotics for two years and you haven’t really been out in the world. Well, that’s pretty terrifying, to come back and just be a normal, functioning person on the subway.
Ruschelle: I see a lot of severe anxiety disorders, and that’s both from the infection and from just the fact that you haven’t been in the normal world.
Cindy: Right, right. I know that you have a project that you’re dealing with right now and you’re working on. Can you tell us a little bit about that project?
Ruschelle: I have two projects actually: the first one is that I’m on a mission to educate 10,000 mental health clinicians to be Lyme literate. I want everyone that I talk to to know how to respond to someone with Lyme Disease when they come in their office. I’m currently working on a training program for clinicians to be Lyme literate. I’m super excited about that. The other more recent thing that’s happening in the office is I’ve collaborated with the wellness center that I am in to offer a consultation package that includes a full assessment of where you are right now, what you’ve already done for your healing to this point, and then a brainstorming around where to go next. That’s also combined with a vibroacoustic session, and that’s sound and vibration healing. This project is really, really exciting for me because sound healing is something that’s new and up and coming in the medical community, and I’ve had good experiences with it. I think sound and vibration are very powerful things that we’re going to see more and more of in healthcare in general.
I think there’s a big need, and I’ve seen a big need for people who just come and they’re like, “Gee, I’m doing everything. I’m either throwing all supplements, everything, the kitchen sink, I’ve been to 50 different doctors and I have no idea where to go next.” That was such a familiar experience to me that I wanted to provide a session where people could come and just kind of sit and get clear on where they go. My role would be to help you organize and offer referrals. Obviously I’m not practicing medicine, I’m not suggesting supplements or nutrition, but I do have people that I can say, “You know, I think you’re really not taking care of your nutrition, so why don’t we go in that direction?”
Cindy: That’s awesome. It’s such needed, and maybe those that you educate can continue educating people, and this can branch out and we can get more people in Massachusetts that actually can understand this and provide more help and healing, both emotionally, spiritually, and not only the person but those people who are connected to them. I’m sure that your services and your expertise lends a lot of help in both directions for that person as well as their partners. I’m really, really excited and very happy to have met you and to learn more about what you’re doing. Before we wrap up, I’m going to ask you one question. You got a lemon, I got a lemon, and my choice in life was to feed into that lemon or to take it and make it positive. My lemonade is certainly providing this education through podcasts that I think more people are liking because they can do it on the fly. In your life, what became your lemonade?
Ruschelle: My lemonade, wow, there’s a lot in there. I don’t know if it’s just lemonade; it’s like raspberry-ade and strawberry-ade and lots of different-
Cindy: That’s okay.
Ruschelle: [Lyme Disease 19:54].
Cindy: That’s okay.
Ruschelle: Lyme Disease literally woke me up, and it brought me to the absolute joy that is life. When people talk about cancer, people who have cancer at the end of their life and they’re just so happy, and they don’t understand why people suffering so much could be so happy, I feel so fortunate because I feel like I get to live my life in that place now. Lyme helped me see the world in such a different way. The world is such a magical, miraculous place, and that’s my lemonade, limeade, strawberry-ade …
Cindy: That’s insightful because a lot of people really don’t have that insight, and they’re angry and they are resentful. That’s the big word. They’re resentful that this happened to them, and I’m glad that you have made some lemonade out of your lemon. We’re going to sign off now, and I want to thank you so much for being part of my series. I hope that you continue to grow both professionally and spiritually as well as heal from this awful infection.
I do want to thank you again, and I just want to let my listeners know that you’ve been listening to Ruschelle Khanna. She’s a social worker working out of Midtown Manhattan. This is Cindy Kennedy, and this was Living with Lyme. Come back and listen to another episode real soon. Take care, be well.