ClinicSpeak: calling on researchers to take on social isolation

Are you lonely and socially isolated? What can we do about it? #ClinicSpeak #MSBlog #MSResearch

“If you have MS and are disabled there is a reasonable chance that you have become unemployed, split from your partner and have noticed your social group shrinking. In short you may be lonely and socially isolated. Social isolation is a big problem in chronic diseases, in particular multiple sclerosis. I see both loneliness and social isolation in almost every clinic I do; it is one of the reasons I go home emotionally drained and exhausted after my MS clinics. Sometimes the best I can do is offer talk therapy to my patients; simply talking to them and asking them about what they do each day and taking an interest in their lives helps. The good news is that the NIHR have just put out a funding call to study loneliness and  social isolation. If there are any social scientists out there interested in putting in a bid around MS please drop me a note. Barts-MS and our partners under the MS@UCLP umbrella look after about 10,000 MSers in Central and North East London and the adjacent home counties. This issue is a big problem and needs addressing.”

“As I am writing this it makes me realise that as loneliness and social isolation are linked to disability then treatments that prevent disability should reduce both these phenomena. I am not sure if anyone has looked into this in more detail. Preventing loneliness and social isolation could be another argument to support early effective treatment.”

11 thoughts on “ClinicSpeak: calling on researchers to take on social isolation”

  1. Brilliantly stated.I am fortunate sort of. My friends, my family and my fiance are always supportive of me and willing to listen and help me. My best friend lives right next door. In my region of the world there are some 17,000 cases I have been told of MS and going back into the last century is considered a hot spot. I have many friends with MS.That all said and done I have been to some support groups as well and these too are problematic especially for new people coming in. The regular attendee's do not embrace newcomers but instead they feel like outsiders. Seeing people with the varied levels of disability can also make new attendee's run for the door.At functions we attend locally we meet many people, all ages, all different, all with their own stories to share and all with varied disability levels. It is remarkable to hear the range of MS up to and including isolation.I shall again point to entry into MS. Assessment of a person's current life status is imperative and IMHO foundational. Best hopeful outcomes depend on a full assessment.For people who have endured MS it is also foundational. Life assessment and prospect interventions. A more difficult hill to climb since they have endured the prospect ravages of mind, body and spirit. But, given the proper entry into assessment and intervention the human being has a remarkable capability to move ahead and not dwell in what has been or might be. Hope is as strong as any treatment.I have talked about all of this with local clinicians, many online clinicians and patients.Just as Brain Health Matters is foundational to saving nerve cells. Attempting to reduce atrophy and work towards reducing the physical damage to a persons central nervous system. What runs through that brain in thoughts, emotions and more is just as important and perhaps more so, after all… Quality of life is the baseline all treatment is about.What can be done?Clinicians have told me, "We simply do not have time to assess patients in a detailed fashion". Yet, there are MS Centers such as Ohio Health MS that do. Social workers who are there for patients. I saw a video of their infusion center which has TV in each room and the ability to open a door and talk with the person next room over. Real thought went into this place that was patient-centric.I have thought "What about self-assessment". Worksheets a patient, family, children can fill out and be able to assess their needs for intervention(s) as well as types thereof. "Am I overweight?" … "Am I having cognition problems?" … "Do I feel isolated or alone?" … "Is my husband understanding?" … "I am coping?" … question after question and being able to either A. Review it and make decisions or B. Have a professional review it and make assessments towards engaging in helpful care.Support groups… Know what? THIS already exists BUT they TOO do not engage in what support groups CAN DO BEST. Even more amazing established protocol already exists in one of the most effective support groups globally known as "Alcoholics Anonymous". With VERY little tweaking the "AA" protocol's are PERFECTLY adaptable to MS. Everything from the "Buddy system" to help to the actual meeting protocol's where NO PERSON need be left behind.This is a goal we hope as we move forward to be able to foster and independently fund.

    1. In my experience, support groups are BEST at encouraging cliques and competitiveness between members on their illness and their treatment options. i don't say that only in the context of ms support groups. AA groups are almost a cult – there is no deviation from the rules. Some of it may be necessary to replace the addictive behaviors of members but MS is not the same. Buddy system? God, imagine being constantly told what to do by someone with MS that has nothing better to do but tell others what to do.

    2. Here I have never saw them encourage a competitive nature towards MS. In as far as "AA" as I noted, "Adopt" with tweaks. MS is not the same as you noted. However, group meetings, a buddy system for support and more are perfectly applicable. The structure should work well with MS not necessarily protocol towards addiction.

  2. I was even talking about this issue today with a friend who also has MS, on dementia in MS, motor disability and on psychological and social disorders … It is a shocking and sad reality to face, which suddenly puts front and that somehow we have to learn to deal … I fully support the most effective use of DMTs early on the foundation of social isolation. I not yet arrived at that stage but breaks my heart every time I talk to someone with MS and realize this cruel reality. And I know that if I don't effectively treat me as soon as this same fate may come a time for me … It's complicated …

  3. Prof G it sounds as if you have burnt out. You shouldn't feel emotionally drained and exhausted doing your job. It is clear from just the activity on this blog that you are working too hard. Take care of yourself we need you to be both healthy in body and mind.

  4. can we have some cross field research or does everything have to have the word ms in front of it? why do we need research on things that are common sense – "As I am writing this it makes me realise that as loneliness and social isolation are linked to disability then treatments that prevent disability should reduce both these phenomena. I am not sure if anyone has looked into this in more detail. Preventing loneliness and social isolation could be another argument to support early effective treatment."we now need research to prove this with irrefutable evidence? researchers make me tired, and i don't even have ms. "i have a headache" "it's not a tumor!"Bojana

  5. when one feels alone in this MS mess and trys to explain to family and the comment back is you don't die from MS. well isolation sometimes is better then dealing with the non-understanding of what we are going through.

  6. Isolation in MS can include emotional isolation and physical isolation. When I felt depressed and anxious I felt no one understood what I was going through, I felt emotionally isolated. I didn't want to tell my friends about it as I didn't want to put them off me. When my MS was progressing and physical changes meant I was now unable to go to places with friends and stand up without pain. My bowel issues progressed and I was once on my way to see a friend on my own and I had complete loss of bowel control when waiting for the bus. Lucky no one saw this and I was wearing jeans and a long coat, there was no toilet near by. I had to just come home after that. I lost my confidence in my body and myself. I felt physically isolated. I now have strategies in place which help me. Including gaining confidence now to walk in a pub on my own and just borrow a toilet. I'm in a better place mentally and physically at the moment but I can really relate to this post. I live on my own and social media helps me feel less socially isolated, so does this blog – so thank you Team G.

    1. You say you now have strategies in place which help you. That is what is missing in the lives of pwMS. There is no drug that can do this. I told my friends that I had MS and they understood why sometimes I couldn't join them. However, something unexpected happened, quite a few of my colleagues and friends were diagnosed not only with MS came to me for advice, they thought I was managing well. This wasn't because I didn't have terrible relapses and problems, it was that they knew what a struggle MS is. So sometimes unwittingly I've managed to help others.

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