Kathleen Steele, LCSW is a psychotherapist, in private practice since 1985 with degrees in developmental psychology, social work and corrections, and clinical social work. She was the clinical, then the executive director, of a nonprofit organization for 22 years, which serves families, couples and individuals, with the mission to assist people to enhance their quality of life and strengthen the communities in which they live. She subsequently directed the social services and spiritual care department of a hospice, and now manages a department at a local hospital. During her career she has created over twenty therapeutic programs, served on the board of three community nonprofits, developed a training program for family therapists, and has been a guest on many talk shows exploring social, emotional and mental health issues. Her general practice currently assists adults, adolescents, couples and families. During the past 15 years, she has become a content expert in working with persons experiencing tick-borne, difficult to diagnosis, and multi system illness, after her two children were grew extremely ill at 10 and 12 years old and remained un-diagnosed for five years. They both are living with multi system illness, Lyme disease and co-infections. Her clients present with a wide range of issues including anxiety, depression, trauma, grief and loss, chronic pain, as well as relationship and family concerns, educational and career concerns, and life transitions.
I'm Kathleen Steele. I'm a licensed clinical social worker and I have a private practice of psychotherapy working primarily with Lyme patients. I went to school at San Francisco State and University of New Hampshire, and I have a graduate degree in social work and also developmental psychology.
I ran a family therapy agency for 22 years and just about the time that I was getting ready to expand my practice, both my children got Lyme disease. And through the journey that we all went through, my practice has become about 90 percent Lyme patients or their families. To work with people that are experiencing Lyme, you have to look at the whole person and the person within the family and community system, because it's an illness that impacts every sphere of their life. So when I first meet with people, I go through a detailed assessment of looking at their education, their career, their family relationships, their ability to pursue hobbies or things that they love, whether they have a medical team that they're comfortable with, how they're handling it financially. So as we go through that process together, then we identify the top things that are creating the most distress in their life. And for some people, it may be the symptoms of Lyme, for other people, it may be how it's affecting their child or the fact that they've had to withdraw from school. It can be quite overwhelming for people because, like I said, it impacts every aspect of their life. They've often been referred by a doctor because they've been sick a very long time, and the course of treatment is not resolving their physical symptoms. They may come in with depression.
Depression can be situational, based on what's happened in their lives because of the Lyme. And it also may be caused by Lyme. So there's a cognitive behavioral piece, to say "How are you thinking about this? How are you thinking about your illness? Are your thoughts making it worse or making it better?" We may look at their diet, and I'll refer them back to their medical provider to look at nutritional issues. We may look at relational issues, so there may be strife in the family that has to do with the roles changing. Particularly on the-the mental health pieces of it, which... it's like a double stigma. They have Lyme, and now they have a mental health issue. Some of them will go to their doctors and say everything else that they have shame and embarrassment about, the depression, or the symptoms of OCD, or the anxiety they're feeling. So, part of our work will be to normalize that in terms of it being a symptom of their illness.
So if we're talking about anxiety for example, first of all, I want to know that they're working with their doctor on the underlying inflammation and illness that may be stimulating that. But then I want to look at behaviorally what they're doing. So they may be making it worse or better based on how they receive that experience. So if someone starts to go into an episode of anxiety and their thoughts are building and they're going "What if?" and they're making it worse in their head and their anxiety rises. Then their autonomic nervous system is off and they're off to the races. It may just crush them, and it affects their immune system. So as anxiety goes up, the immune system goes down. So depending on what they're presenting with, we will come up with a very individualized way of approaching it.
Often times when patients come to me, they've seen many, many practitioners, trying to get answers. The most common diagnosis they may have had was chronic fatigue, fibromyalgia, and depression. And often they've had experiences with providers, well-intentioned providers that have implied that there's nothing wrong with them. So by the time they get a diagnosis and come to me, some of them come in very relieved, because they finally have a label to form kind of an understanding of what might be happening with them. Generally, they're late stage Lyme by the time this happens, and it's going to be a winding road, and what worked for somebody else might not work for them. So they go through a time of grieving and loss. They have lost faith sometimes in themselves because they have not been good enough historians of their illness or good enough advocates of themselves. At least, they feel that they haven't. Or, they don't trust doctors and providers because they've been told lots of different things along the way to getting there. So some of the work is around helping them reconnect with themselves in a way that they can hear their own thoughts and trust their own feelings and advocate for themselves. I may occasionally get a patient that comes in that's been referred for depression. But as I'm hearing the depression story, I don't hear a precipitating event that may have situationally led to it. There's no family history of depression. They had a flu-like symptoms and had some aches and pains around the same time, and the symptoms are presenting as if it could be a tick-borne illness. In those cases, I will refer them to a Lyme literate provider to deal with their own assessment.
A lot of times, it's helpful for patients to have a family member or friend that accompanies them to doctors' visits. Many of them have neurocognitive issues. Ordering things in sequentially and following through and making their notes can be very, very hard. To be able to listen to the doctor provide information and take notes is almost impossible for some people in the midst of this illness. So, having someone to help organize that, kind of like a personal assistant to say "This is what the doctor said and you've got these answers to the questions," or even type it up for them can be quite helpful.
There are times when, uh, patients come in and they'll think it's going to be a quick course of antibiotics and then they've hit a couple walls where it hasn't gone back. And, so, they're-they're becoming sad or depressed or scared or their wife is getting worried because he's got to get back to work. And they're very disillusioned. Sometimes they have doubt in their doctor; they have doubt in the treatment. And while I won't give them medical advice, I will ask questions to see if they're covering the things in the illness that need to be covered, and then I'll coordinate with their doctor. I'll call the doctor and say "Hey, I just met with Jim, and it sounds like he doesn't have a clear understanding of the importance of detoxing while he's on the antibiotics, so he's feeling sicker." The doctor may have said "You need to do this for x number of weeks or months," and they get halfway into it and they think "Uh-uh, it's not working. In fact, I feel worse." So part of that is education, and it's closing the loop again with the doctor because sometimes the doctor has told them, but they didn't hear it. I know people that think "Nothing's going to keep me sick a month," and now they're three years into it. I know my next client coming in has been in it five years, 10 years. So, while I won't set that expectation because their journey is their own, I will want to support them engaging with the doctor about his or her prognosis, and certainty is a huge part of it. And a lot of what we work on in therapy is how do you sit with uncertainty? They'll think it's like strep throat, and they're going to take it and they're going to be over and they're going to be back about their life, and if it's appropriate for that individual, is I'll just draw it on my whiteboard, a line that says "Here is where you are now, and you're wanting to get back up here. But the pathway there can look like this." And when you go up, it's very common for people to think "I'm better now, it's over. I'm, like, on my way." And then a week later, there might be a dip or a new symptom or it's worse in some way. And then you go down and you may feel hopeless again, and what we want to do is look at the trajectory over time, not any specific day.
My job is not to sit there and tell them they must do it, but it's to come alongside them and say "What are the obstacles? What's in the way?" It might be "Well, I have to buy these foods for my kid," when in reality they may not. So we'll together approach what the obstacles are to making those kinds of changes, and then we'll try to build systems in place. Some people want... will want to get on board in alignment with the patient, just like in families where there's an alcoholic. Sometimes a partner may choose to continue drinking because they don't have an issue with alcohol, or they may choose to do that in alignment. That's a very individual, family... an individual decision. Where I see the biggest challenge is when there's a child that has the illness and the parents are in disagreement. So, an example might be that a certain diet has been recommended for, uh, 13 year old. And one parent thinks it's a bunch of silliness and the other parent thinks it might be life-saving. Those are the really tough conversations. And part of the work I do is to help people get down to what their most fundamental values are and their most fundamental beliefs, and to have those guide the decisions they make.
People often, when they tell someone they have Lyme, have mixed reactions. I would say to a person, except for the kids that I see, the adults, even some kids, say "I wish I could just say I had cancer, because everybody would know what that is, they would have compassion, I wouldn't have to justify that I don't feel well." It's very hard to say "I have Lyme." If they start to list their 30 symptoms to someone to explain it, they're going to either blow that person away and lose them halfway through, and it's depressing to the patient often, to have to say that. And they often hear "Well, you look great." Well, lots of times when they are able to get out, they do look great. But they don't feel great, and if you'd seen them 24 hours before, you might see a different picture. So it is laborious to talk about it. So, part of what a patient has to decide is when is it worth talking about?
One of the ways to help patients and families, caregivers manage the stress is first to just name it and to acknowledge that it's really, really hard. So, we talk about stress reduction. Mindful meditation is something I teach every single person that comes into my practice, because getting that autonomic nervous system to calm down allows the immune system to rally and deal with other things, and it also helps them to be able to respond in the moment, instead of being in an agitated state all the time. There's a high rate of illness among caregivers because of the demands that can be 24 hours a day, but the emotional component of it as well, witnessing suffering, is really hard. With one mom, I had her meditating through washing the dishes, because she could feel the water coming over her hands, she could hear the sound of it hitting the dishes. So, it becomes a very here and now thing, that then calms the autonomic nervous system down, it kicks in the parasympathetic system, and they start to relax, and a moment will go by, and their heart rate variability will become regulated. And that's associated with allowing it to be a more healing environment in their body. It's really, again, getting back to what are your core values? And as you trim away room for healing, what can you let go of and what are you going to hold on to? So, it's really getting pragmatically organized to deal with the fact that you have an illness, and you can't do everything like you did before. So, there's grieving and loss in there, but there's also a freedom that comes on the other side of it.
Learning to say no to things. "No, I can't come to that baby shower next weekend because I know I'm going to have a busy week and I'm going to need to rest on Saturday." So, it's giving people permission to set limits and say no, and also to recognize and tolerate the difficult feelings that come along with that.
Relationships are really impacted by the illness of Lyme. But when one member becomes a caregiver and one member becomes a patient, that's often something people have never thought about. There's complicated feelings, and a lot of times, both the patient and the caregiver shut down the communication because they're feeling feelings they think they shouldn't have. Like, resentment may come up of "I'm not getting any sleep either, but I'm still getting up in the middle of the night to help her, and then I have to go to work tomorrow, and I'm exhausted, and she's going to sleep the whole day." There's all kinds of feelings that go on inside sometimes that need room for exploration, so that empathy can remain for both the caregiver and the patient. When it's a child that has a sibling that's sick, they may often feel ignored, and Mom and Dad are putting all of the financial resources and the time resources into the sick child. It's really important that the parent take time to really hear how the other child is doing and have some really individual time with them. And it's okay for caregivers to take care of themselves. I think that's the other thing that really has to be called out because you will see parents that really don't take care of themselves, and it makes sense because there are 24 hour needs, and if they crash and burn, nobody gets anything. There is no certain path through the Lyme journey that ends at a happily ever after for everybody at a specific time. So, part of what we do is we face that and look at what that's like, and then how can they handle and manage and hold that reality? So, we're going to look at their relationships, their spirituality, the things they do that have meaning in their life that can transcend the illness. They have to change their aspirations, perhaps. Several young adults I've worked with have had to stop college. And so they've had to really get to know themselves on a deeper level of what they're really about and how they are going to spend their time and what, at the end of the day, are they going to feel good about, even when their functional capacity is limited?
Isolation is one of the most difficult things in this illness, as people have to pull back from lots of arenas in their life. And if somebody is in a living situation by themselves, it can be even more painful because they don't have family members coming and going. So, support groups can play a really important role, and there's websites where you can go and find a support group in your area for Lyme, specifically. But I always encourage people to think bigger than just their illness. For some, going to a Lyme support group might really make sense, because they want to hear that someone's going through what they're going through, and they will evaluate whether that's helping them feel better or worse. Sometimes groups can be quite negative, and it's important to identify that, because it's not helpful, and other times, it's-it's greatly helpful, it helps people toss around the things they might toss around with a partner, if they had a partner to toss it around with. If someone still has some mobility, they're able to get out now and then, they might go to a photography group, where they're going to talk about things that have nothing to do with Lyme, and that's going to feel very liberating. So what I'm helping them look for is what's going to keep them connected in the community. Might be a church or a spiritual practice, might be a hobby. And what's going to help them feel a sense of meaning, belonging, and excitement, you know, something that gets their brain working about something other than just Lyme disease.
So if I have someone who is significantly experiencing depression, and I'm not talking about just feeling sad, but I'm talking about thinking about "It might be okay if I wasn't here," or "I just don't think I can do this past my next birthday." Then I'm going to be listening to that really carefully. I will talk with the whole team about it, if there's a team of providers, we will share what we think's in the best interest of the patient and talk with the patient, as well. I do safety planning with people, what do you do when. "If you feel like you can't do it anymore, what's your plan going to be?" So, we're going to look and face suicidal thoughts head-on, if people are having those, and we're going to look at adding a psychiatrist to the team, if that's needed. Now when someone is at risk, you can, as a provider, talk with the other providers without the patient's permission. I tell people up front I'm going to do that, because my relationship with them are really important. But I won't step back from it if I think their safety's at risk.
There is hope, people do get better. I've had the joy of seeing clients get married, have their first children, go off to college. And I've also seen patients that have changed their goals and incorporated a longer term perspective of their illness, knowing that they're going to have to live their life a little differently than they have planned, they're on Plan B or Plan C. But they still are finding joy and meaning in that. I've had patients talk about, you know, "I would never wish Lyme on anybody, and I certainly wish I didn't have it. But I wouldn't have the relationship with my brother, my sister, my dad that I have as a result." So, people are able to find within this illness the things that bring meaning to their lives. Having relationships with people around them, to help them through the times when they're not seeing that, is really important.