by Jenny Lelwica Buttaccio
There are times when the mental weight of dealing with chronic Lyme disease becomes too much to handle. Severe symptoms, mounting medical bills, and social isolation can leave you feeling overwhelmed and discouraged. Talking to friends or family can lighten the mental load, but sometimes, you need the help of trained professionals to cope, implement positive or more productive habits, or provide emotional support.
However, choosing a therapist when you’re chronically ill can be an added challenge. Many mental health professionals aren’t aware of the possible mental and emotional toll of tick-borne infections like Borrelia, Bartonella, Babesia. You need a trust-based relationship with your therapist, and the absence of that can hinder your ability to make progress with the stressful circumstances in your life. So how do you find a professional you can trust?
We reached out to two experts, one therapist with an extensive background in Lyme disease and another who doesn’t have any, to find out what characteristics might be helpful when choosing a mental health professional. Here are the six qualities they recommend you look for.
#1 A Familiarity with Lyme Disease
Sandy Berenbaum, LCSW,, has been working with clients who have Lyme disease for more than 28 years. A Lyme-literate psychotherapist and social worker in Connecticut, Berenbaum has also battled Lyme herself since 1984, but she didn’t receive a proper diagnosis until 1990 — and many of her symptoms were psychiatric.
After her diagnosis, Berenbaum sprang into action and began attending Lyme conferences to learn as much as she could about the illness. Even as a social worker, she was unaware that tick-borne diseases could cause mental health issues like depression and anxiety, bipolar mood disorder, psychosis, and more. “I’d been to about three Lyme conferences when it occurred to me that it could be Lyme that’s causing these symptoms,” she recalls.
Berenbaum recalls the story of a young teenage boy, a former honor student, who had been referred to her practice for psychosis and paranoia in 1991. The teenager was on the brink of being admitted to a psychiatric hospital, but then he disclosed to Berenbaum that he had previously participated in volunteer work at a nature center in a Lyme-endemic part of New York. Berenbaum spoke to his mother about the possibility of a Lyme infection and its connection with mental illness, who took her advice to investigate whether or not Lyme disease could be a contributing factor in the decline of her son’s mental health.
“I recommended a doctor who was very Lyme literate. He started treatment, and it was a rocky road because it was just around the time when the doctors were starting to figure out that there were coinfections,” says Berenbaum. “But he was getting better, and when he went on Babesia treatment, he started getting better faster.” Today that 15-year-old teenager is grown up and has a family and a demanding career as a lawyer.
That experience became the catalyst for Berenbaum to dig deeper into the root cause of why people might present with behavioral problems or other mental health problems. Of course, not every incidence of mental health is caused by Lyme. Still, a sudden onset of symptoms, ones that don’t go away with the usual treatments, or multiple psychiatric diagnosis could indicate exposure to Lyme disease or Lyme coinfections.
“When a therapist doesn’t have familiarity with Lyme, they won’t really understand how tremendously fatiguing the illness is,” says Berenbaum. That could lead to a patient feeling lonely, misunderstood, and unsupported, and they can become soured on therapy at a time when they need it most.
#2 A Willingness to Learn
While it would be great to only work with a Lyme-knowledgeable mental health practitioner, the reality is that not everyone has access to one. Instead, many of us have to use the resources that are within reach for reasons such as insurance reimbursement, the urgency of the matter, or proximity. Fortunately, that doesn’t mean you’re out of luck.
Amanda Stephenson, LCSW, a licensed clinical social worker in Lombard, Illinois, doesn’t have a history of working with clients with acute or chronic Lyme disease, however, she strongly feels that any therapist who’s trying to build a therapeutic rapport would benefit from doing some research when treating someone with the illness. It starts with being open to a new patient’s explanation of Lyme disease, she notes — but that also requires you, the patient, to show up prepared to do some friendly educating.
“I would recommend bringing resources on Lyme to the first session, because any initial session is primarily information gathering and assessment,” Stephenson says. “When patients can provide as much background information as possible, it is helpful to the therapist in understanding their needs.”
Stephenson also suggests explaining your current treatment plan for Lyme and any mental health side effects you might have already identified. For instance, if you’ve noticed you feel depressed or anxious after taking a particular medication or treatment, information about Herxheimer reactions or detoxification strategies could be useful information to share. That way, the therapist can begin to learn how Lyme symptoms can ebb and flow from one day to the next.
#3 Offers a Preliminary Phone Consultation
You’ve probably been through many different kinds of treatments and seen several doctors in the process, so no doubt the idea of relaying an extensive medical history to someone new who might not be open to hearing it is exhausting. So before you have your first official session, ask about a free phone consultation — the majority of therapists offer them — to get a feel for whether they are a good match for you and your needs.
“I do a half-hour to 45-minute phone intake that I don’t charge for; I want to make sure that it’s a good fit between the person that’s calling and me,” says Berenbaum. “And by good fit I mean, am I going to be able to help this person? And how are they going to know, before they decide to start with me, that there’s a good chance I’m going to be able to help?”
During the phone consultation, Berenbaum gathers some basic information, explains her problem-solving approach to working with patients, and helps them understand that she and the patient work together as a team to define the problems. Typically, phone consults are informal and won’t serve as a therapy session. But it’s a way for you to get a sense for a therapist’s knowledge of Lyme and willingness to learn before investing your time and money.
#4 Sympathy Toward Invisible Illnesses
For most people with Lyme disease, their symptoms and suffering might not show on the exterior, and that invisibility can result in disbelief and skepticism among peers, family members, and the medical community. Indeed, it’s not uncommon for doctors or other healthcare professionals to question whether the illness is real, or if it’s all in a patient’s head.
The ramifications of this doubt can be risky for patients’ well-being. Primarily, they may be less likely to seek help for mental health services at all because they’ve come to mistrust the very systems that offer them. Is there a way through it all?
“I think it’s important to voice this concern upfront with the therapist. Exploring previous negative experiences is imperative in establishing a positive therapeutic relationship with any provider,” says Stephenson. “Therapy, particularly from a social work perspective, is supposed to be a helping relationship, so the clients are considered to be equal partners in the process.”
Stephenson adds that it would be helpful to sign a HIPPA release form, allowing the therapist to talk with the medical providers who are involved in your treatment process to gain insights into what you have been through.
#5 Has A Network of Referrals
Sometimes mental health doesn’t improve quickly or significantly enough with therapy alone, and there may come a time when you need a referral to a psychiatrist with prescribing powers. For that reason, when you choose a therapist, it’s beneficial to pick one who has trusted relationships with at least a couple of psychiatrists. You might never take advantage of those relationships, but you don’t want a lack of them to ever become an obstacle to your healing process.
“A lot of Lyme patients can’t find a psychiatrist or a psychiatric nurse practitioner who knows Lyme or will treat them with psychopharmacology,” says Berenbaum.. “I’m not saying psychopharmacology is for everybody, but if you decide you need it, you’ll want to know who to go to,” explains Berenbaum. She has a ready list of psychiatrists she can recommend who she knows are amenable to Lyme patients’ needs and are knowledgeable about the range of treatment options.
#6 A Flexible Cancellation Policy
Sometimes, the unpredictable nature of Lyme is such that you don’t always know how you’re going to feel on the day of an appointment. Due to symptoms beyond your control, you may have to cancel with super-short notice — a move that can cost you a cancellation fee or even the full price of a session at most therapists’ offices.
Because of her familiarity with Lyme, Berenbaum doesn’t charge a cancellation fee of any kind, though she appreciates when a patient can provide her with at least 45 minutes notice. “I have chosen to work with a whole population of sick people, so I think it would be wrong of me to charge for cancellation when you’ve had a bad night or your brain isn’t working well,” she says.
Berenbaum might seem like a unicorn in this matter, but there are other therapists out there with flexible cancellation policies. For instance, one therapist in Illinois who works with chronically ill patients told us she allows her patients to text a cancellation notice by 7 PM the evening before the scheduled session without a fee. (Most therapists require 24-48 hours or more of advance notice.) Those few additional hours allows patients to see how their symptoms wax and wane and guageif keeping their next-day appointment might be feasible after all.
Of course, it’s important to be respectful of a mental health professional’s time and livelihood, and to consider the other patients who might benefit from your open time slot. But it doesn’t hurt to explain your situation and how your symptoms fluctuate from day-to-day, and to ask about the possibility of a flexible cancellation policy. You might find that some people are more accommodating than others.
Some final words of wisdom: When choosing a therapist, find one you believe can become a source of strength and support for you, as opposed to another source of stress. And if ever you feel invalidated by your therapist, it’s perfectly okay to move on to someone else.
“I believe that my client and I form the beginning of a team,” says Berenbaum. “My first goal is to give the client hope, whether it’s a mother, whether it’s a kid, whether it’s an adult — they need hope.”