Talking the talk
How to find the right therapist when you have MS
By Mike Knight
A shopping cart. James Dearing, 46, thinks about a shopping cart when he’s trying to tame the internal chaos and turmoil that’s so often part of his life with multiple sclerosis.
But it’s not just any shopping cart. It’s his wife, Molly’s. And it’s not about what’s in it. It’s about how she chooses what’s in it.
“My mind can go a million miles a minute,” says Dearing, a former healthcare professional. Especially when it’s fueled by anxiety, depression and emotions that frequently come with the disease and its uncertainty and that once caused him crippling panic attacks. Now, instead of trying to avoid or ignore those feelings and emotions, he embraces them.
Cue the cart
“When my wife goes shopping, she’ll find something that she may want, and she’ll put it in her cart and leave it [there] for a while,” he says. “That’s how I look at it with some of my feelings and emotions. I just need to put it in my cart and walk around the store with it for a while.”
Dearing learned the technique from his therapist, Nathan Gates, a licensed clinical professional counselor near Dearing’s Havana, Illinois, home. “Nathan uses phrases like, ‘Let’s just sit there with that feeling, with that emotion for a minute. Let’s just give it some room,’” Dearing says. “Now, when I do feel sad or angry or depressed, I remember that.”
Dearing says the process helps him identify and accept his emotions without attaching embarrassment or shame to them, which allows him to avoid blowing the situation out of proportion and derailing his day.
Research shows that up to 60% of people with MS face anxiety, depression, and other mood and behavioral challenges, both from the disease and because of it. As Dearing’s example shows, mental health therapy is a proven and effective way of addressing, managing and successfully living with many of these conditions.
But first, you have to find the right therapist. Then you have to go. If it’s not a good fit, you might have to start all over again.
Here are some basic steps that can help you make informed choices.
First, get over yourself. No, really
“Although excellent medications and therapies exist, only about half of people with mental health difficulties will ever get treatment,” according to “The Tragedy of Mental Illness Stigma,” a Psychology Today article from 2018. A National Alliance on Mental Illness study reports people spend more than a decade from the onset of mental health challenges before seeking professional help to address them.
And that’s just the general population.
People with MS may already feel stigmatized due to symptoms and conditions of the disease, including bowel and bladder issues, problems with gait and balance, speech problems and cognitive fog. According to multiple studies, people with MS are much more likely to experience depressive disorders due to the anxiety, uncertainty and related fear MS causes, in addition to the response to brain lesions that develop because of the disease.
Evelyn Hunter, PhD, a psychologist at the Auburn Psychological Wellness Center, specializes in helping people with chronic illness, including those with MS. Hunter says people with MS should not look at seeking help for their mental health as optional. “Mental health is not an add-on,” she says. “It is critical to the physical condition in MS. You should treat your mental health in the same way you treat your physical health with MS. You will see a huge difference in the quality of life if you do that.”
How do I even know if I need therapy?
Given the predisposition people with MS might have for developing some type of diagnosable depressive disorder, chances are good that you might benefit from some type of therapeutic counseling. Donna Fisher, a licensed professional counselor in Nashville, Tennessee, says there’s a fairly straightforward way to tell if therapy could help you.
“If your symptoms of hopelessness, helplessness, persistent sadness, irritability are not improving after a couple of weeks or longer, then it is probably a good idea to get a mental health evaluation,” says Fisher, who was diagnosed with MS in 2017.
Don’t know where to get an evaluation? Ask your primary care physician or neurologist for recommendations.
Finding the right fit
In addition to providing a mental health evaluation, your neurologist and primary care physician should be able to refer you to a psychotherapist. If you are working, your Employee Assistance Program may include therapists and counselors. Or search for “Find Doctors & Resources” at nationalMSsociety.org, where you will find counseling resources, plus a search function that will find those resources near you. You’ll also find designations for the type of provider. “Partners in MS Care” are healthcare providers who have demonstrated knowledge and expertise in treating MS patients. “Center for Comprehensive Care” are Partners in MS Care that provide coordinated multidisciplinary MS care.
“I think the public often assumes that a dentist or a general practitioner all sort of have the same training or do a certain standard routine,” she says. But therapists? Not so much. “There are many kinds of therapies and modalities out there, there are many kinds of therapists, and they’re trained in very different schools of thought,” she adds.
According to Franco, therapists with at least some level of MS experience will appreciate that “early on in working with someone with MS, you need to explore the immediate pressing symptoms and concerns the client is struggling with and take a thorough history of the MS, not just their developmental history.”
Doing so, she says, may expose the need for “additional treatment or care because of crisis or stress upon the client’s support system.” Those therapists might also help people who are newly diagnosed navigate, explore and plug into the various resources that exist to help them.
You’ll have questions
Be prepared to ask the healthcare provider questions: what type of insurance they accept, hourly rates, cancellation policies, how close parking is to their office, whether they offer virtual visits, years in practice, specialties and the like. You should also ask if they are licensed and about their experience treating MS patients or those with chronic illnesses.
The National Alliance on Mental Illness divides healthcare professionals who are licensed to provide therapy into two categories. The first includes those who offer assessment and therapy: psychologists, counselors, clinicians, clinical social workers and therapists. The other category includes professionals who can prescribe and monitor medication and provide therapy: psychiatrists or psychiatric mental health nurse practitioners (PMHNPs).
For information about the differences, visit the National Alliance on Mental Illness.
You may also want to know what therapy models or modalities in which the therapist specializes.
Psychodynamic therapy focuses on the roots of emotional suffering to reduce symptoms and improve clients’ lives. Interpersonal therapy works to improve your relationships with family and friends as well as your social functioning.
According to the Mayo Clinic, cognitive behavioral therapy “helps you become aware of inaccurate or negative thinking so you can view challenging situations more clearly and respond to them more effectively.” In acceptive commitment therapy—the type Dearing receives—clients learn to accept their inner emotions and deeper feelings as appropriate responses that shouldn’t keep them from moving forward with their lives.
You may also want to know what types of issues therapists can help you with. Hunter says her clients who live with MS typically come to her seeking help understanding the disease and transitioning into life with MS, managing cognitive fog and pain, and improving their relationships with carepartners, family and friends. Franco says she helps her clients address fear, anxiety and depression, plus the ambiguous losses the disease breeds.
“There’s a fear of loss of connection, stigma with being different, possible future loss of employment, fear of increasing physical or cognitive disability,” she says. In addition, her patients often need help coping with losses of former self and independence. She also uses guided imagery and relaxation techniques to help her clients have stress-free MRIs, reduce headaches, anxiety during infusions and injections and relieve caregiver stress.
You may also be able to find much of this information via your therapist’s webpage bio or profile. If not, you may ask in advance of your first visit or just wait for that appointment.
Great expectations
During your first appointment, Hannah Perryman says to be prepared to talk for 45 minutes or more, mostly about yourself, and answer a number of questions, some of which may feel very personal and might make you uncomfortable. “The first session will be an intake or an assessment. It will be full of questions to answer, and just know that going into it,” she says.
Perryman was diagnosed with MS in 2009 at the age of 24 and became a licensed social worker in 2018. She began seeing a therapist in her teens and continues to see one regularly. Early on, Perryman says your therapist may want to know if you’ve experienced depression, anxiety, trauma or other types of mental illness. “Be ready to talk about those things or to say, ‘That is something I have or have experienced,’” she says.
Perryman is quick to add that you don’t have to answer every question and don’t have to spill your guts over everything at every session. “You can say, ‘Yes, I have had this experience of trauma, but I’m not ready to talk about it today. The therapist will make a note to talk about it in the future,’” she says. “You can space it out.”
Those early sessions also allow you to determine whether your new therapist is the right fit for you or not. How can you tell? Diagnosed with MS in the early 2000s, Lisa Cohen began seeing a therapist not long after, thinking it would be good to have such a professional on her care team. Cohen urges you to trust your instincts. “I think you need to have someone that you have a rapport with,” Cohen says. “And I think that’s something you can tell. At least for me, I can tell relatively quickly.”
Hunter agrees. “It’s like any other relationship,” she says. “You’re looking for fit. Does this person’s style, the way they work, the type of therapy they do, fit well with who I am as a person and what I feel my needs are? Sometimes it may take one or two sessions, but most times you know pretty early on whether or not it will be a fit.”
Hunter adds that it’s essential to be open to the process and understand that therapy is rarely easy. “Therapy is not comfortable for everyone,” she says. “You are coming into a place, and you’re being vulnerable with a stranger. That discomfort will and should be there. It’s important to differentiate between the ‘I don’t like being vulnerable’ versus ‘I don’t like this person as a therapist.’ Don’t confuse the issue with ‘I don’t like being vulnerable.’”
Hunter says that if you’re OK for part of the session and then suddenly your therapist asks a question that makes you squirm, it’s likely that the question hit a sore spot — which may well bear further discussion — rather than being about a bad fit. And when your gut says it’s not a good fit? At least consider talking with your therapist about it.
“This is really hard for a lot of people,” she says. “But therapists are in situations where we hear folks’ truth all the time. Most therapists are going to be OK with a conversation around, ‘Hey, I don’t think this is a good fit.’ Nine times out of 10, if you feel like it’s not a good fit, the therapist is also feeling that way.”
Perryman suggests giving it two or three sessions before trusting your instinct and pulling the plug.
“If you realize that it is telling you, ‘This isn’t the right person for me,’ you could just not go back and ghost your therapist,” she says. “They wouldn’t take it personally, I promise. It’s happened to me, too. They’ve chosen not to come back and see me, but I still wish them well. A thing to keep in mind if you do decide to ghost: The therapist might contact you to make sure you are OK and to make sure your reason for not attending a session isn’t because something happened.”
On the other hand, how do you know what is a good fit?
Hunter says increased coping skills, understanding and knowing strategies you can use when feeling stressed or depressed are signs you are benefitting from the therapy.
“Another successful outcome is learning how to center holistic wellness in MS. Multiple sclerosis is one of those things where you don’t get to ignore your health,” she says.
“You can’t ignore what’s going on in your body, and you can’t ignore what’s going on in your mind. Therapy helps to remind us to center our mental health in the context of our physical health,” Hunter says. “It all works in a cycle, so we’re healthier overall the more we focus on these truncated pieces of our health. That’s the successful outcome.”
Mike Knight is a writer in Indianapolis, Indiana. He was diagnosed with MS in 2013.
Tags: Spring 2022