By Rachel Horne
For people with multiple sclerosis, we know this much is true. Dealing with the physical side of the disease is just one part of the struggle.
Feeling alone is another.
Not only are people with MS significantly more prone to loneliness compared to the general population, but strong evidence shows it also puts our brain health and overall health at risk. It can lead to depression and anxiety; exacerbate our MS symptoms and increases our chance of heart disease, stroke, hospitalisation, suicide and early death.
This connection between mental and physical health has long intrigued Dr Vicky Leavitt, a neuroscientist and neuropsychologist at Columbia University in New York. For more than a decade, she has studied cognition and MS. In recent years, however, her research turned to looking at the effects of loneliness on people with MS and showing how moderated social support groups reduce anxiety and depression.
“It broke my heart to hear from my patients about how lonely they were and how nobody really understood what they were going through,” said Leavitt. “I knew I could bring them together with other people with MS who would understand; who would just get it.”
So in 2019, she set up eSupport Health: a company which offers professional moderated support groups for people with MS – which take place online. This was deliberate as she knew many people with MS face logistical problems travelling. It also turned out to be very prescient during the Covid-19 pandemic.
Then last year, she partnered with the National MS Society to run the CONNECT study – aimed at seeing if a if a 12-week, program of professional online support group participation improves mood, depression and quality of life in people with MS – and, in particular, Black and Latinx people. Groups, we know, who have traditionally been overlooked in MS research and undertreated for mental health.
To learn more, I chatted with Dr. Leavitt. The interview has been condensed and edited for clarity.
Why MS?
“MS intrigued me as a psychologist because it tends to onset in early adulthood. By the time you’re an early adult you feel like: ‘I’ve got this. I understand what the rules of the game are and now I’m going to have a life.’ And then after an MS diagnosis, everything gets upended; the rules suddenly change. It upends our contract with the universe. What that does to a person deeply interests me. What allows some people to cope while others really struggle?”
Why loneliness and MS?
“My original interest was cognition and MS. But what I found myself hearing repeatedly was that people with MS almost always tend to feel very lonely. They would tell me ‘I have supportive family and great friends, but nobody really understands what I am going through.’ It was this solitary journey I wanted to understand and treat.”
What is the impact of loneliness on people with MS?
“In the broader literature, we know loneliness is on par with smoking a pack of cigarettes a day. It wears away people’s health in every which way: increased mortality and morbidity.
What I have found with our MS patients is that folks who report having higher social support have lower depression and lower fatigue – the things you might expect to see. They also have better cognitive function and better motor function.
Why set up e-support Health?
“In my research, I became more and more interested in the importance of social support. As human beings one of our greatest needs is to be understood; to know that somebody gets it and knows what we are going through. We need to connect in a meaningful way.”
Tell us about the CONNECT trial with the National MS Society?
“We are fully enrolled. We set our target at 80 – and we had 240 people come through the door. At the moment, we have six groups up and running – two people are White and everyone else is Black and Brown. That’s amazing.
I have a Black coach who runs the groups because we thought that would be important – and it is. Patients all the time are saying to me how they love having a group leader who is a person of colour. They feel very comfortable.
What we are learning – what I am learning – is how deep this goes. We have a Black man in one of my groups who said ‘I have never met another Jamaican who has MS, but I met one in my group!’ That’s really special and really important for him. I have a Black woman who says ‘I have never spoken to another Black person with MS.’ I think that as social animals having the support of each other and being understood and feeling part of a community is so integral to who we are.”
Why do you think group therapy is more effective vs one-on-one therapy when treating loneliness in MS?
“I think group therapy is superior as it delivers benefits on three levels. You have a professional therapist with you in the room. You have the support coming from other people who understand what you are going through – that affiliation, that connection. The third level of therapeutic benefit comes from when you turn your attention outward and help somebody else.
The data are very clear on this. Altruism is beneficial.
Do you engineer your groups?
“For the longest time, I didn’t want to engineer the groups because I saw so much magic happen when you just threw people together. I have changed my thinking. We have created a group for the newly-diagnosed. We also have people who come along and say ‘I really am at a point in my progression where I don’t want to scare other people, but I do want to talk about the realities of what I am going through and sometimes it is not pretty. I want to be able to hear from people at a similar stage of the journey.’”
Why do you think it is key the meetings are moderated?
“There is a glut of chat rooms and places to meet online. But some of that I think is a little unhealthy, a little toxic, a little scary. When you have a moderated group, it can be so much more productive and valuable. Our licensed, experienced therapists are all trained and have MS-specific knowledge because that is so important.”
Disclaimer: The opinions expressed here are those of the author and nobody else.
@RachelHorne19
I have MS and have recently started a new job as a Support Worker, for clients with disabilities. I’ve not disclosed my MS to the company or my colleagues. It is an amazing experience to help others. I talk to clients all day and see firsthand their lives including those experiencing loneliness..
Thanks for commenting. I think we all feel better when we help someone . I am sure you have so much empathy for people you are helping – because of your background. I wonder – do you think people with disabilities – not just MS – tend to suffer from loneliness?
Hi Rachel, thanks for replying. Yes many people will various disabilities experience loneliness. Clients are often happy to accept/receive companionship as the main form of support.
Rachel, I like your interview of Dr. Leavitt. There are so many nuances that make a support group supportive and I think you covered that well. It’s easiest to have and get understanding from someone who has lived it. A trained moderator is important. Good groups are positive and Validate but dont compare Or minimize. It is a practice of radical acceptance.
Thx for clarifying. I only have had experience with one-to-one therapy. The drawback was that I spent quite a bit of time explaining MS to the therapist. Plus the very practice itself felt isolating… just two people in a room. If further issues arise, I would very much be interested in group therapy with ppl with MS.
Hello Rachel,
A thought provoking article. I loved the idea of people from BAME groups meeting other people from the same background for the first time and being astonished. Do you think there is space in the UK for something like esupport Health. This is a crowded area and there are many groups already trying to fill this space. Could the MS Therapy Centres take a more proactive role? Could Shift.MS take up the baton especially for people diagnosed pre DMT? Transport was a significant issue but the internet immediately eliminates these problems.
Too much of social media such as Twitter is merely an echo chamber. Trying to hear new voices and comments is very difficult. Only too often people are merely repeating existing information.
An organised forum would be excellent especially as the world for people with advanced MS is becoming smaller, their social capital is shrinking and they want to talk to people suffering similar problems. How many shops and cafes have steps and so often public transport does not make travel easy.
Any ideas?
I think you raise some great questions – and, like you, I am wondering how it could work over here. I do know that in the US – as Anonymous points out below- the cost is borne through private health insurance who are, in some cases, willing to pay for them. (I also imagine the main cost comes from paying a trained, licensed therapist to moderate). Who would pay for this in the UK? I’ m not so sure the NHS would – seeing as they are so overstretched – but that is just my opinion.
I am really hoping the US MS Society study goes well – and it can be adapted here. As you said, perhaps MS Therapy Centres would be interested?
My MS Therapy centre is transferring some face to face social activities to online ones such as book clubs. I think this is an organisation that could and should promote this sort of activity.
No chance the NHS could ever give this sort of activity the green light. For that matter no national group would run with it. It needs to be a local group where people know each other already and so promote social well being and social capital.
The problem i encountered with support groups was that I didn’t connect with other attendees because I am relatively mobile and had/ have young children which is a different circumstance than someone who has a high level of disability and /or retired with grown families. I connect to other pwms through on line forums, but I have had to be very disciplined about which ones to participate in. Pragmatic ok, negative vibe not ok. With regard to a therapist, it’s expensive in US even if you have private insurance. I had similar experiences to you, Rachel, as I often found that I had to explain MS to a therapist, which isn’t helpful.
However, I’ve had much more luck when I sought out a psychologist who practices cognitive behavioral therapy CBT, https://www.apa.org/ptsd-guideline/patients-and-families/cognitive-behavioral, and evidence based “self-compassion”, pioneered by my fellow Texan Dr. Kristin Neff. https://www.theatlantic.com/health/archive/2016/05/why-self-compassion-works-better-than-self-esteem/481473/. Early in my MS journey, I sought out a psychologist who assisted clients to set goals to meet with a life transition. Oddly, goal orientated psychotherapy is not the norm, instead it’s “person (directed) centered”!!! Why??? MS is so life altering, career changing/ ending, ability altering, so it is not a surprise one NEEDS some goal setting guidance from a professional therapist because everything has been turned upside down. Expecting a pwms who had to relearn to speak or drive to get no real guidance on possible future life goals is ridiculous. https://link.springer.com/article/10.1007/s10879-021-09505-8 . Also, faith and spirituality has grounded me personally, and I found I need to make sure I don’t neglect this aspect of me. Interestingly, this is shown to be important but overlooked aspect by neurologists of pwms. ! https://www.tandfonline.com/doi/full/10.1080/21642850.2020.1792308. This is just based on my personal experiences. Rachel, I would love for you to report on different evidence based methods therapists employ to help pwms thrive. 🙂
I think the point is to take advantage of connecting disparate people – from around the UK – together. Being online can make this happen. (Also means ppl don’t have to travel which can be tough for some). I also think much can be learned from bringing people from different backgrounds/areas together – vs ppl who already know each other and share the same reference points. Plus the point is to reach ppl who don’t, say, have access to a local MS centre. Maybe they live in a remote, rural area – hence feel v isolated.
Rachel, thinking about it further, I’m a Support Worker rather than Care Worker. I can do personal care but that’s more a care workers role. My role is to support the client become as independent as possible, doing what they want to do in life. I support each client for 2 to 3 hours at a time. Care workers may get as little as 15 mins with a client, some 30 mins. It depends on needs, funding available, preferences, or if the client wants to just sleep instead.. etc.
The NHS Expert Patient Programme was good. Not long after I was diagnosed with MS I attended face to face. There were two other pwMS on the course. It was a fairly relaxed approach but professional too, as it’s facilitated by two patients/ volunteers with various long term health conditions. They have follow up coffee groups, if people wish to attend.
The funding for healthcare is different in the USA as it’s mainly funded through private medical insurance. I would be keen to join this trial if I lived in the USA. If I couldn’t afford medical insurance I would be very keen to join the trial if I could, as I would appreciate the support through the group and access to signposting of other assistance available.
That is the issue, isn’t it? Funding… As you said, in the US it is private health insurance. Overhere think funding would have to come through charities (am guessing). Will ask around to see if similiar programs are being funded. Take care.
Licensed therapist is a bit of a grey area. Privately provided Counseling and Psychotherapy is unregulated in the UK. Anyone can set up as these. They might have only completed a free two hour online course and then call themselves a Psychotherapist, with no previous experience or qualification. It’s crazy and many people are unaware of this. To work for the NHS in these areas a professional university gained qualification is required.
Thank you for adding this. I was unaware of this… It would be critical, inmy view, if you had any therapist working with people with MS that they have a prof university gained qualification. I would also feel more confident if they had NHS experience.
Personally I think e-support health groups do have their place – if properly done and supported/mediated. Think would work not just with MS – but many other patient groups.