The Loneliness of MS

The Loneliness of MS

Suffering from Multiple Sclerosis often involves enduring a number of tough physical symptoms (numbness, weakness, pain, etc). While these are all awful, I want to talk about one of the psychological issues that those with MS, or any chronic illness, are forced to deal with: loneliness. When I speak of loneliness, I don’t necessarily mean being physically alone (although that can certainly be included here and can be a cause). I’m talking about that feeling of loneliness, that hollow emptiness and unhappiness you have inside. It doesn’t matter how many friends you have or how many people you talk to. It’s a despair that has a number of causes and can be downright dangerous if not addressed.

It’s not easy to admit you’re feeling lonely

I’ll come right out and admit that feelings of loneliness are something I struggle with constantly. That isn’t an easy thing to admit. If you even casually knew me, you might think that’s crazy. I have close friends, I have an awesome wife and dog. I try to get out as frequently as possible and if you see me out or even in pictures, there’s usually a great big smile on my face. To say that I suffer from loneliness doesn’t seem to make sense. There are so many times though, where I sit and think to myself that I’m alone, that no one really understands me.

As is often the case with those who suffer from chronic illness, what you see on the surface is nothing like the turbulence behind it. Like many suffering from Multiple Sclerosis, I am on disability. That means that I have to spend a lot of time by myself. While at times that can be awful, that isn’t exactly the only reason I say I’m lonely. More so, it’s the fact that I’m on disability and not able to work that gets me. I think one of the core causes of loneliness is being different than everyone else (or at least how we perceive other people). Most people work and have a career. The longer I am on disability, the more I start to have trouble relating to those who aren’t, and the more I worry about them not being able to relate to me. Most people don’t want to be different from what’s considered the norm.

Fatigue and other invisible symptoms

Like many with MS, I suffer from bad fatigue. Most people don’t truly understand real fatigue. It’s not a matter of just being tired. No amount of sleep or rest will help it. Fatigue is a force, an excessive and uncompromising heaviness pushing down on every part of my body and mind. When you have real fatigue, the simplest of tasks feels like trying to move through quicksand. In many ways, it’s the most debilitating of symptoms. If I’m having trouble walking and need my cane or wheelchair, I can still function. When the fatigue is bad, I can’t do anything. Even trying to make it to the bathroom or taking a drink of water can be difficult. Fatigue makes me feel trapped in my own body. Being physically alone can be tough but being alone and being unable to really function is a major reason I feel loneliness.

Multiple Sclerosis is full of invisible symptoms like fatigue. Cognitive impairment, pain, vision issues are all real problems many face on a daily basis. Invisible symptoms are easily dismissed by many people. Can there be anything more isolating than someone not believing you because they can’t see your problem? Even just suspecting they don’t believe you can make you feel alone. If there is one advice I can give those without MS reading this, it’s to believe us and show us you believe us.

Missing out on social events

Obviously visible issues can lead to loneliness too. Being unable to attend events because of accessibility or temperature can certainly be a common issue for people. Both of those are issues for me too. I use a cane and get around well enough but there are some events that I’d normally attend that involve taking a lot of stairs. On a very good day, I’ll give them a try (and suffer from it later) but there are many days where I know I can’t even attempt them. Same thing with warm temps, if I know it’s going to be hot, I end up skipping the event. Think of how many things take place outside in the summer: a lot. I’ll use a cooling vest but even with one, warm temps can be disastrous to me. So not being able to attend events with others can certainly be a source of loneliness. Even if you do make it out and need a cane, wheelchair, cooling vest, etc. you tend to stand out. Again, it’s those differences and not being like others that can cause feelings of loneliness.

The snowflake nature of MS can also cause its share of alienation. With the disease affecting everyone so differently, we are often prone to hearing people saying that they know so and so who has MS and then explain that they aren’t that bad. The person doesn’t mean to be harmful but saying something like that can seem very dismissive and cause some inner turmoil. Even in MS support groups, you may talk to numerous people and they may not have the exact symptoms you have. That can be scary and isolating too. Even among others with the disease, you can be completely alone with your symptoms. That can have some profound physiological effects.

Depression is common with MS

While there are many reasons why someone with MS can feel alone, it must also be pointed out that depression is a massive problem for those with the disease. The National MS Society even notes that clinical depression, the most severe form, is more frequent in those with MS then the rest of the population and even other chronic illnesses. For some of us, our feelings of loneliness can be directly traced to depression. It is unfortunate that there still seems to be a stigma with regards to depression. Luckily that is starting to go away, but confronting depression can still be hard for many people. Loneliness and depression are obviously linked; one can be the start of the other and vice versa. Depression can be dangerous, even life-threatening. The National MS Society also notes that the risk of suicide may be 7.5 times higher in MS patients than in the general population. This is a striking statistic; if you think you are depressed, I urge you to seek help for it.

Feelings of loneliness can be caused by a number of factors for those with chronic illness. For me, the biggest issue is feeling that no one can understand me, and that I’m alone with this unique disease. That isn’t the truth though, and it’s not the truth for any of us. It’s important to remember that none of us suffering with a chronic illness is alone. That can be easier said than done. There are a lot of support groups, both online and in-person, that can be very beneficial. I certainly think everyone should seek professional help and speak to their doctors if they are feeling depressed and/or lonely. I also recommend getting involved with others that suffer from the illness. Sometimes just having someone to reach out to, even just to vent to, who you know understands what you are dealing with can make a massive difference. I’ve met a lot of folks with MS from all across the world and if I am having trouble, I reach out to them and vice versa. Always remember that you are part of a community. You are never alone.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (81)
  • dtwhite1
    3 months ago

    I have read several of your articles and they have all made me feel less alone. You touch on several topics that are hardly anyone addresses..ie someone saying they’re tired too or they forget words too. Thank you for sharing. You are so much appreciated

  • ARTISMAE129
    6 months ago

    Devin, Wow, it is a bitch isn’t it? I read your article & knew exactly what you were talking about. I’ve had MS now for 13 years and have been off work now for 20 months! The first year wasn’t as bad for I was too busy with doctors & disability paperwork. Still waiting on that, but God blessed me with LTD thru my previous employer. Now, I just feel so helpless. I was the one taking care of everybody & household things. My husband is great at this, but I feel guilty that I can’t help out as much. I do feel lonely often. I try to get out and do things when I can, but its not as much as I would like. I’m glad that I stumbled on your piece. Thanks!

  • mollyculelove
    9 months ago

    God I am crying my eyes out reading this. Every word you said is perfect. I have been chronically ill with rare migraines since I was 2, but have only known for seven months that my brain has gone from five white matter matter lesions to over 22 lesions, active plaques, Dawson’s fingers. So I have had a confirmed diagnoses for less than a week now and I feel blindsided and scared everyday that lapses and I have increased symptoms wondering how else my body will betray me before my doctor can get me treated. It took disability less than two months to approve my application and that felt like giving up but I can’t drive or read
    Most days from my migraines that damaged my vision permanently anymore so most of my friends from college and old coworkers have cut contact and don’t really know how to approach me when I need to talk about being sick. It’s almost like the grieving of an old life and having to accept that I may never be well enough to work or go back to school or even get married and I don’t think I would even ever dream of having kids anymore bc my biggest fear was always getting sick like my mom who is riddled with autoimmune diseases like all the women in our family on her side so not sure I’d want to pass this down to a child. All these weird things you think about right? Anywho thanks for the post great read.

  • Devin Garlit moderator author
    9 months ago

    Thanks so much mollyculelove, I’m very sorry to hear of your issues. It can be so daunting and scary. I try to remember that even though things seem like they are changing, that it doesn’t have to be the end of anything. It will mean making adjustments though, it won’t be always be easy, but you can adapt. You can improve too, there is always hope. Even if you don’t, you make adjustments and still live a great, maybe even better life (the appreciation I have for even the smallest of things really is amazing, I have hard times, but my great times are probably much better than if I didn’t have my issues). Remember that you aren’t alone, and there have been many of us in your situation, and we’re all here to help you!

  • lolobeeb
    9 months ago

    Thank you so much for this post…you touched on so many of my issues. Just knowing that there are people that actually “get it” helps a lot. Something else that remains an unrelieved challenge for me is my struggle with feeling that my life has no “purpose” anymore. Transitioning from the life I had to one in which the sum total feels like it is comprised entirely of Dealing with the issues you describe in your post is a struggle that I just haven’t been able to handle very well.

  • Devin Garlit moderator author
    9 months ago

    Thank you lolobeeb! Finding people that “get it” is huge. It’s how I found this site, way before I even started writing here, I just needed a place where people understood and were real about it all. I think that struggle to find purpose is huge, it’s something I still fight with myself. You can 100% find purpose those, you can find something, and it may be were you least expect it!

  • maggydoots
    9 months ago

    I know this will not work for everyone: when I “retired” I made a promise to myself to get out once a day even of it was just to the gas station. I took 1.5 years off and my mental health suffered, so I decided to work part time, in spite of volunteering. I don’t make near what I used to, and I am not sick enough for disability. Thankfully, my husband is supportive of my working even though he doesn’t always understand it. I do activities in a nursing home. It keeps me humble and grateful for what I do have. It does cut into my energy flow, but I have worked out a routine of activity and rest. I work out everyday at the gym, which helps my pain. I don’t always have the energy for social events due to all this, but my first job is to work, and my second is to exercise, eat right, and stay as healthy as possible. I do schedule social events when I can, and it is nice to get outside my head and listen to other people and what theor life is like. Being a good listener can take the focus off me for a little while. I gave up social media for Lent a d you realize how much you rely on it, and realize how ridiculous it is. Though I will go back to it to interact with loved ones, all the “crap” will be deleted. Also at family even its, I focus on taking pictures and the kids when I stressed. They always bring joy and everyone loves having pictures to remember the event. Sometimes, I just have to trick my no d and fake it till I make it. Hopefully, I can do so for a long time to come. God bless all you warriors! You are never alone! ❤

  • Devin Garlit moderator author
    9 months ago

    Thank you maggydoots! Sometimes forcing ourselves to get out at least once a day or even just to interact with others can make such a massive difference in our lives. No matter how difficult it may seem.

  • wendylea50
    9 months ago

    I REALLY needed to read this article! I recently acknowledged to myself that I am lonely. I have a loving family but they have jobs,college etc. And after a few years they don’t want to hear about it anymore. Fortunately I have a good family doctor and am now at that place where we have to reevaluate my depression meds and I only have to wait three months to see a psych doc. Depression can get bad for me. When I depressed I don’t talk. Not good. When I start thinking I don’t want to do this anymore, I know that is not the real me and suicide is not an answer. This is such a great site and I am so grateful to have found it. Thanks for your writing.

  • Devin Garlit moderator author
    9 months ago

    Thank you wendylea50. Depression is such an ongoing battle for so many of us. It’s great that you’ve recognized it, because so few people do, or don’t want to recognize it. The same with loneliness. I hate admitting that I get lonely, but there is no shame in it, it makes sense. Sometimes it’s just comforting knowing that others are experiencing it too, not that I’d wish it on anyone, but there is something about knowing and seeing that other go through it, and “get it” that is helpful to me (which is a big reason why I write about topics like this a lot). Thanks so much for reading and sharing some of you story, I feel that sharing a little bit our story not only helps us, but helps others who see it. By the way, I have also written more about depression here: https://multiplesclerosis.net/living-with-ms/its-time-to-get-real-about-depression-and-suicide/

  • Marlene1105
    10 months ago

    Like everyone else, I was very busy with a career I really enjoyed. I had a great salary, had a beautiful condo which I loved, drove a brand new sports car and was able to take great vacations. Then I was diagnosed with MS! I was “let go” from my employer because of my disability, I had to sell my condo because it was an upstairs unit and had to sell my sports car because it was too hard for me to get in and out of.
    On numerous occasions I have told various members of my family how lonely I am. There reply was “I don’t want to call you just to hear how lonely you are”. So now when I do talk to them, I make sure not to mention anything about MS or feeling lonely. Sad but true!

  • Devin Garlit moderator author
    10 months ago

    I’m sorry to hear Marlene1105, your story is so similar to mine. Your family’s reaction is far to typical too. While I know it can’t quite stop the loneliness, please know that you aren’t alone, and that there are many of us just like you out there.

  • Marlene1105
    8 months ago

    Hello Devin:

    Thank you so much for your response. I wanted to apologize for not responding
    to you sooner. It’s been a while since I have logged on to this site. Your reply means a great deal to me. Just by reading that I am not alone and not the only one that goes through these issues is comforting (if that makes sense.).

  • BuckeyeCurt
    11 months ago

    Thank you. I’m really battling loneliness right now. My MS took me from teaching in September, surrounded by people and events to home bound by November with little contact and the days are so long.

  • Devin Garlit moderator author
    10 months ago

    Thank you BuckeyeCurt, I completely understand. Remember that you aren’t alone, many of us go through this, and you will adapt, you will get through!

  • 12 months ago

    Hi,
    Thank you Devin, I just turned 16 years old Wednesday. And have had a hard time
    with this and didn’t know how to put it into words. Thank you again.

  • Devin Garlit moderator author
    12 months ago

    Thank you chy! I’m was fairly young when I was diagnosed as well, so I understand. Hope you are well!

  • SweetSunshine
    1 year ago

    Hi Devin
    I read your Feelings Loud &Clear. And Thank you for also bringing this Particular Symptom into a conversation. Much like yourself and many others who suffer from A Chronic Illness Ours Being MS, I worked for years in the Medical Profession I took care of Patients, it was a big part of my job to as I refer to as Unwrapping my Present. Because Each of my patients were like a little gift, they each somehow brought something to my life Everytime i saw them. Maybe they made me laugh or shared an event in their life, or an accomplishment. As well as sharing not so pleasant Events they were dealing with. Nevertheless I felt it was very important to listen to their voice, watch their eyes, follow their body language because unwrapping the inside most definitely, almost always had some direct influence on what they presented with on that visit. Many times patients told me that after they had spent time with me while I was initially conducting Triage before they would see The Dr. That they always felt better Emotionally.
    So With a History Of being able to unwrap even the Toughest Packages it would make A Positive Assesment that Surely I don’t have to deal with Depression, Loneliness, or the feeling of being closed off to much of the World “Right”. I unwrapped and opened people up All day, I know how it works, I Prided myself on My Unwrapping Abilities, I Thanked God Daily for allowing me the ability to get inside these Magnificent Gifts, and help fix anything Rattling around or Broken inside these Gifts. But!!! Now that I’m Rattling around and feeling Broken I’m the one looking for Understanding and a Little Compassion When I say-No I’m sorry I can’t make a lunch date or a scheduled Event. And I hear “Well you were just fine last night when we talked” or “Why do you wait until the last minute to cancel”
    As your aware MS is like one of those packages you may have been given at some point in your life where the package is large and as you begin to open it you come across another wrapped box and within that another wrapped box, until you finally get to the Real Box that holds the mystery. When your living with MS you can be fine one conversation ago or even one hour ago. And in as much time as it takes to open That last box- your just DONE. And the plans you had are now just one more reason to feel that Loneliness,Devin you’ve shared in previous Shares the difficulty of making ourselves ready for an outing wether it be An Actual Event or A SIMPLE TRIP TO THE MARKET( insert Sarcasm here) Nothing is just Simple. To Shower and Dress in itself can be at times
    “The Days Activity”!
    Let the Loneliness begin. I’m no better at dealing with this issue than anyone else. I Thought that “I” Being the Bubbly Happy FunLoving Silly Award Winning Gift Box Opener that “I Was” would allow me to slide right through the majority of the not so Pleasant Gifts that come with MS, and that I would already be in control of these Road Blocks and just Drive right around them, and carry on with my Happy Bubbly life of the Party self.
    And I couldn’t have been more Wrong, In Fact I would venture to say that I’m a Bigger Baby Than I could have imagined, because I was so sure after researching MS for Months after my Dx in 2008 that I had this all figured out. My Breaking Point was when my Mimi who was 99 yrs 11 months and 28 days old passed away just short of turning 100. As Mimi requested in her “Travel Plans” ( her Funeral Arrangements) put me in my Favorite lite blue dress, fix my hair like I actually wear it make sure my makeup and jewelry are just right, put me in my box, say your good byes and off to lunch you go, have a drink for me and carry on with life “No Crying and Whinny stuff” and Mimi was clear on her wishes.
    The Morning Of Mimi’s only day of Visitation and The Funeral as well. I couldn’t muster up enough energy to get in the shower let alone get dressed or attend Mimi’s Going away Party. That was the Most Devastated I believe I had ever been. My Mimi’s Funeral and There I was just laying in bed crying All by myself, After about the 9th phone call from “Concerned Family Members” Requesting Answers as to why I couldn’t be where I was supposed to be!! And the straw that broke the Camels back, of Seriously Lori-This isn’t about you it’s Mimis Day. Yup I cried like a little Girl, and At my Husbands Request I Shut my phone off. Point being We don’t get to decide When Where or what we want to do all the time. I push myself Hard as Hard as I can Every Single Day. But when MS Puts the Brakes on, I don’t care who you are, MS Wins that Round.
    And Loneliness engages, Were not able to work any longer,(some are and God Bless you I hope you are able to for a long time ) so we miss Working the Outside Communication with other People over Work. The Pride Of Feeling as A Functional Member Of Society. People can tell you that your still Functioning just differently. And to a point that’s True. However to those of us who can’t Function like we did the Majority Of our Lives, YES-We feel Depression We Feel left out We Cry We long for more Activities with Friends and Family. I know for me I Volunteer for Several NonProfit Groups, I cook some Good Old Fashioned Pasta For 200-300 Veterans for most Big Holidays. I’m not able to attend the Functions because that usually puts me down for a day or two, but it’s worth it, Just knowing I Contributed.
    And I appreciate the things I’m able to do. I refuse to take Steroids or Depression Medications. We tried that route twice the Steroids made me MEAN MEAN MEAN & FAT. The Depression Medication made me Sleep all of the Time. So I decided to Force myself to get into the Things I Loved Making Floral Arrangements Volunteering For NonProfits and Playing with my Grandchildren. And when I start feeling Depressed Lonely and Whinny I either get Really Creative or I have a little Pity Party and Watch Sappy Movies on The Hallmark Channel so I can have A Good Cry Knowing That All Of The Perfect Lives inThese Movies are in fact “Movies” and No One has A Perfect Life.
    “And I’m Perfectly Happy with My Perfect Imperfections .
    Somehow Someone Bigger Than All Of Us decided that I needed to be where I am. And yes Chronic Illness and Chronic Pain Do Change You, And I’m still learning how to Cope just like everyone else. But I also have so many things to be Thankful for.
    And Having All Of you Amazing People to talk about Our Feelings with, IS A BIG DEAL

  • mollyculelove
    9 months ago

    Thank you so much for that!! People like you make a difference in the medical profession when you were able to work. I was just telling my mom the other day…”why don’t I have any friends who are there and can be strong for me?” I have always been that friend of strength and encouragement and when all of the sudden I’m not and show the opposite side those same friends seem to up and vanish and not have a lot to offer in the way of support. Seems like a lot of what you are talking about. Sorry about your mimi. But you seem like a very strong individual. Take care *hugs*

    Jessica

  • Pammie
    1 year ago

    Thank you Devin for your posts! You seem to be the person I can relate to the most. Your posts give me hope when I feel like I don’t have any left. Thank you!

  • Devin Garlit moderator author
    1 year ago

    Thank you Pammie! I am very happy to hear that!!!

  • ff6vpe
    1 year ago

    With tears in my eyes i thank you and enjoy each of your posts. I can relate to tou on EVERY level. There has not been a single post i do not relate too. Right now, i am dealing with the feeling of loneliness and confusion. I do not write the same. Thank goodness tht these phones fix our words at times. But i am so sick of being compared to someone who knows someone. Or my drs not caring as much as my nurses. Its been 8yrs straight of infusion and i take at least 18 meds a day….im exhausted. I went from being a senior college grad to a single parent. And i only have disability to live on. I am 36.. 24 was the last time i thought i knew where i was going. I have been strong until lately. I feel, no, i know my disease is progressing but for some reason ppl tend to know my body rather than me. Dont mean to sound like a bummer but please keep speaking. Your a reflection to someone like me and i pray for better days for us all….

  • Devin Garlit moderator author
    1 year ago

    Thank you so much ff6vpe. I am so sorry to hear of your struggles. Always remember that you are not alone, far from it actually! That is something that I always try to remember when I am feeling especially lonely (which is even more than normal now that my marriage has just ended). I remember that there are many other folks like me out there, many that battle this disease. Even though I haven’t met many of them or even spoken to them, I know we are all somehow one, fighting this disease and the problems that come with it. I hope you are having a decent day!

  • Amamax4
    2 years ago

    Thank you so much for putting my feelings and thoughts into words …I do try and stay active as well other days not but…thanjs for an amazing article….blog..

  • Devin Garlit moderator author
    2 years ago

    Thank you Amamax4! Very much appreciated!

  • Freida Bailey
    2 years ago

    This said it quite well. I’m not as severe in some areas .
    But in others it is me too a tee. I do stay as active as possible. Cause if I don’t I feel worse.

  • Devin Garlit moderator author
    2 years ago

    Thank you Freida Bailey! Staying actively really does seem like the best thing to do!

  • Freida Bailey
    2 years ago

    This said it quite well. I’m not as severe in some areas .
    But in others it is me too a tee

  • saddison
    2 years ago

    Excellent and accurate article. Chronic illness threatens to clothe us in loneliness. We persevere the best we can, and fatigue is a huge factor in our ability to succeed.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much saddison! I appreciate you reading and commenting!

  • DonnaFA moderator
    2 years ago

    Hi saddison, it’s lovely to see you this evening! Please know that we’re here to share support anytime you need to feel community. Have a wonderful evening. -All Best, Donna (MultipleSclerosis.net team)

  • trloftus
    2 years ago

    Amen brother! As challenging as many activities are, I seek them out because a lonely, fatigued existence sucks! I really miss work and the many personal relationships that come with a job. I also miss the sense of purpose that comes with a job. Oh yea, and I miss the money too. I have been in remission since 2009 and now consider myself well beyond MS. However, I cope with the damages from 3 old spinal lesions everyday. However, everyday I see more progress – more healing, and one day I will walk again – without assistance. You can recover too. Never give up.

  • ganna
    3 years ago

    You put into words how I feel. Sometimes the sadness I feel is overwhelming. I am the complete opposite of the person I used to be. Sometimes it is just difficult to cope. But we MSers are a strong group of people. Take care.

  • Devin Garlit moderator author
    3 years ago

    Thank you for reading and sharing. I agree, MSers are a strong bunch. I like to think it only hits the very strongest of people!

  • 105bvmf
    3 years ago

    Thanks for posting this. I have problems sharing my thoughts with others. You’ve hit the nail on the head. My sadness too,is things taken for granted for many years are no longer possible. Best wishes to you.

  • Devin Garlit moderator author
    3 years ago

    Thank you!

  • lisalu
    3 years ago

    I came across this post by accident, and I am so glad I did! You are very good at writing all the things I think and feel, but have a hard time explaining. The sadness and loneliness of MS can be so debilitating. The silent symptoms of MS are always the ones that are hardest to communicate in my opinion. I really appreciate you sharing this. I will be reading and watching for more of your posts.

  • Dawnceleste
    9 months ago

    Yes exactly!

  • Devin Garlit moderator author
    3 years ago

    Thank you so much for reading and commenting!!!

  • Humph
    3 years ago

    Great post! I intend to detail a response…

  • Devin Garlit moderator author
    3 years ago

    Thanks for reading!

  • giraffe516
    3 years ago

    Loneliness is something I deal with every day. Were it not for my pets I would be totally alone. I walk with two canes and since that happened pretty much all of my friends have moved on. Accessibility being a problem they just don’t want the hassle. My significant other walked out for same reason. I really can’t go anywhere or do anything. Basically I work and sit at home everyday. Work 7 days a week so at least that gets in me out of house. Never thought life at 50 would be like this.

  • Devin Garlit moderator author
    3 years ago

    I’m sorry to hear that you also deal with loneliness. Happy to hear you have some pets though, I have a small dachshund that keeps me company. It doesn’t solve all of the loneliness but it certainly helps some. Thanks so much for reading and commenting.

  • Syzygy
    3 years ago

    I’m at home too, I’ve had MS for 24 yrs. My only tasks today are to book a flight across the country and to contact roofers for an estimate to replace the roof. I have worked on this for 5 hours and coordinating schedules, infusions, how everyone will be available when needed at the right time and place etc. has blown my circuits! I used to just drive or bus to the airport in whatever town I could fly from with the best deal. I’d love to fly from San Francisco where my son is but I now have to consider how much walking, the time of day and navigating on my own. Flights from Reno are close but crazy expensive. Previously I would have just rented a car in Atlanta and driven to my brother’s place, while having adventures along the way. Now it’s “what if I get sick or lost” My therapist agreed with me, I am a precocious ager.

  • Devin Garlit moderator author
    3 years ago

    Traveling, pretty much every aspect of it, from planning to the actual journey is extremely tough for me. So I sympathize with you a lot!

  • Chad
    3 years ago

    Hello all. I’m new to the group as of today. Like right now. I’m just wondering why I feel so isolated. I’m not that guy. I’m usually the one to start the party or be the last one standing. Now I’m just not able to keep up and my ex thinks I’ve changed. Well, yeah I have! I just have to pick and choose when I can or want to be the old me again. Maybe I just keep fishing in the same dirty pond. I’m 40. I act 30 and play like I’m 20. But those days of just saying YES to going boating all day are over. I miss the old me but I’ve really recognized who understands me and who doesn’t. I don’t know. I’m just hurting and confused. And I’ve been in the infusion lab for the last week so maybe I’m a bit emotional about it all. I’m just tired of it all. Hope you all have a great night.

  • Devin Garlit moderator author
    3 years ago

    Thanks for commenting! I’m a lot like you, I’m 38, and have always been the first to start a party. It’s TOUGH being in our situation. My mind constantly wants to say yes to every event but my body wants to say no. It’s really hard to say no and then even harder to be at home knowing that the fun is still happening without you. One nice thing is that I know I’ve certainly shed some dead weight friends in the process. I try to make the most of the moments I have though, trying to focus on quality rather then quantity. It’s tough though and I completely understand and sympathize.

  • potter
    3 years ago

    Several weeks ago I told my husband I was lonely, he told me to go out and make some friends. I told him it wasn’t that easy everyone my age is retired and traveling the country or with there grandchildren. He told me that it was hard because I wasn’t a friendly person. It had all started when a neighbor came by and I stopped to visit. My husband said he didn’t want me bothering his friends that I didn’t converse fast enough. I have known these people as long as he has, I don’t understand why they aren’t my friends anymore. He told me that they weren’t ever my friends. He apologized later but it still hurts. I have felt lonely for a while at parties, I can’t stand around for a long time so I end up sitting by myself. I have decided that I feel less lonely being alone if that makes any sense. Potter

  • sarah
    9 months ago

    I’m with ya MS friend. I went from working 10 hr days in which I loved, juggled 2 boys, yard work, keeping it all together do my husband wouldn’t have to, plus that was my personality.. I can do it all!!! To being made feel like I was more stupid than I already feel about myself. One day we had visitors come to visit & my husband told me later on,he didn’t want them coming into our house because he said it was to cluttered. I was flabbergasted!!! To being called out because I would forget certain details of the story. Our yard isn’t as nice/pretty as it once was because that was something I always done. You never realize how much you did or unable to do untl your not able & how much you enabled the significant other from doing it all to make there life easier until “The MS Monster” strolled into your life!!!

  • Devin Garlit moderator author
    3 years ago

    I’m very sorry to hear that. I hope your husband can actually become your supporter instead of the opposite of that in the future. I hope you can convey to him that you need more support from him. Standing is a common issue many of have. It seems so many social situations involve standing around and talking to people. If I have to stand for long, there’s no way I can focus on a conversation because I’m focused on not falling! Thanks so much for sharing!

  • Mandyrose
    1 year ago

    When anyone’s significant other starts saying hurtful things, it’s time to express clearly, how you feel. DO NOT WAIT! Remove the “MS factor” and stand up for yourself. My Ex became very insensitive in the last yrs. of our marriage. He would become visibly angry and upset if I had to cancel an event. He walked ahead of me, often. I started to lose my self esteem. I wish I had taken my own advice, but the sadness and guilt I felt were profound.

  • nvrgvup
    3 years ago

    Thank you for writing this article! I needed to read that this Monday morning when everyone in my house has gone off to school or work and then it’s me. One more thing that sucks about this MS are the good days and the bad days….and I LOVE the good days, but on those days my mind will torment me and make me feel guilty for not working outside the home, and just when I’ve had a few good days in a row and I think ok…maybe I can volunteer or I mentally make plans for being more active in society, then the bad days come again and MS rears it’s ugly head. MS is not a disease for wimps. It takes ALOT of courage and strength to survive mentally with this disease. For those of us who have had MS a few weeks or years be proud of yourself, because not many people in society could handle what those of us with MS are handed every day with this disease.

  • Devin Garlit moderator author
    3 years ago

    Thanks for reading and commenting! I completely understand and go through all of that. I even tell people when they ask how I’m doing, I say, I have good days and bad. Mondays like today, when everyone goes back to work can be especially tough! It certainly does take a lot to deal with all this. Those of us with MS are warriors, no doubt!

  • 3 years ago

    I can not express the magnitude to which I must thank you for writing this and also for all of the comments that began due to your honesty and relatable words.
    Sometimes I feel as though I am physically and mentally strong enough to be able to begin a new successful daily routine and/or work schedule. Unfortunately, as soon as I feel ready willing and able, At least one or two symptoms flare up and my new beginning is sadly short lived. It can be quite frustrating to share disappointing attempts to those who love me and especially knowing that I let down my future self. I am still struggling in becoming familiar with who I am now and how I can live in the present.
    This post truly made my day.

  • 3 years ago

    I appreciate this response tremendously and I hope you will keep us all posted on your journey. I too am hoping you have a few more brighter days than not.

  • Devin Garlit moderator author
    3 years ago

    Thanks so much for reading and commenting! I understand what you are saying too. I feel like every bad day I have, at night I’ll think to myself, ok, tomorrow is a new, I’ll start over, I’ll get something done, I’ll begin a new routine. Then the next day comes but so does a problem (or a few). I’ll be too fatigued, in too much pain, my legs won’t work, etc. and before I know it, it’s bed time again and I just have to have that same hope for the next day again. It can be so crushing, so devastating to me to have that happen. To have so much hope for starting something, getting something done, and then to have it crushed again. It’s like constantly climbing to the top of a mountain, only to get knocked off right before I make it to the top. Anyway, I hope for better days for you. Hang in there and hopefully we’ll each get a few good days soon!

  • Redd
    3 years ago

    Jealously is starting to get to me. Ok it is running rampant in my head. My career GONE and in a humiliating manner that I have to live with. I look at my friends that have families and am in awe of how they juggle working, then running their kids to sport events then they go home and make dinner. They all sit at the table and eat. I cannot imagine how they do it. The energy to get one of the tasks done would do me in. I envy my friend and her normal life with normal problems. Ok the point is i totally understands what you wrote. I just love how it takes me so long to write what one sentence would convey.

  • Devin Garlit moderator author
    3 years ago

    Thanks you for reading and commenting. I understand your jealousy SO well. It’s another side effect of all this that I seem to be battling more and more. I too see friends and even family doing so much and just can’t even imagine it!

  • Jewels
    3 years ago

    Nice story. I get where you’re coming from, however people ‘say’ they understand but the don’t. I’d rather just not talk and remain “lonely”.

  • Devin Garlit moderator author
    3 years ago

    It’s true that many people don’t really understand, no matter what they say. Those of us going through it though do understand. I’ve seen the saying “you don’t get MS until you get MS” and I think it’s so true and applies to this. Even for me, just seeing other folks like me commenting on this is a bit comforting to me because I know that there are people that understand, there are others going through, and so I’m not truly alone. Thanks so much for reading and commenting.

  • Angela
    3 years ago

    This is probably the best, most succinct explanation of what it’s like for me to function day to day with #MSandLife.

    While I’ve long thought that I was just becoming more of an introvert as I’ve gotten older, I realize that it’s largely a result of feeling more isolated because I cannot predict what it is that will affect me each day–or even within a day–and because I know that I am operating in a manner that is different from others, including not working (until very recently when friends who operate a nonprofit gave me a contract), dealing with symptoms that are often embarrassing, and other challenges.

    This sense of isolation can be as debilitating as the disease…and it is likely something that only someone living with or affected by MS can understand.

    Thank you.

  • Devin Garlit moderator author
    3 years ago

    Thank you for reading and sharing! That is certainly a good point that I’m not sure I emphasized enough, that this loneliness, this feeling of isolation can be every bit as debilitating as the disease. I am definitely hoping more people will read and understand just how big of an issue this can be. Thanks again!

  • Lisa
    3 years ago

    Thanks for this. I commented earlier to my husband that I was becoming an introvert. This is only interesting because we are both huge extroverts. I think what I was attempting to convey to him is this sense of isolation I have recently begun to feel. So much of what you wrote helped me to clarify what is going on with me.

  • Devin Garlit moderator author
    3 years ago

    I’ve always been an extrovert too, which I think has made all these feelings of isolation so much worse. Thanks so much for commenting, I’m glad I could help in some small way!

  • Learner2010
    3 years ago

    Thank you for writing what so many of us feel. I go in and out of depression (with a large component of loneliness,) and I know the more I connect with people the healthier I am. But it’s a constant struggle to stay in connection. I am very blessed to have a strong support network. Even with that, MS is a tricky fiend and loneliness is a real symptom.

  • Devin Garlit moderator author
    3 years ago

    Thank you so much for reading and commenting!

  • Dave
    3 years ago

    Ditto to many of the comments that have been made. For me, it was the fact my career as a 1st professional degree college administrator, which was moving at light speed, came to a crashing halt. I was able to work for about a year after diagnosis, but the cognitive function was shot. Over that last year, I was able to come to the sad realization on my own that I couldn’t function at my prediagnostic level and I felt that I wasn’t being fair to my employer. So I asked my doctor for help with phazing in my disability over a month to help my employer.
    The biggest shock came when I sat at home doing nothing all day long while my wife carried on with her career. Feelings of complete uslessness as a non-productive member of society quickly set in. People would say I have to find a hobby. It is nearly impossible to have a hobby if you have the limitations that MS patients have including loss of driving a car.
    I could go on and on like many of us can, emptying our souls of the pain we hold inside.
    One last thought, the loneliness you talked about so eloquently can quickly evolve into jealousy and resentment agaist loved ones and colleagues furthering the loneliness we carry.

  • Devin Garlit moderator author
    3 years ago

    Thanks for your comments! It’s tough not working, sitting home and not doing much. It so hard. Like you, I don’t drive now either, which is really rough. I completely agree with your point about resentment and jealousy and I’ve been thinking about writing something about that too. Something I definitely have a lot to say about too. I 100% feel that jealousy with my friends and loved ones. It’s embarrassing to myself that I feel that way, but as you understand, it’s very hard to help. Thank you again for reading and commenting!

  • Matt Allen G
    3 years ago

    Oh man, I totally, completely, 120% feel exactly the same way. I could write a comment longer than your article on how much I can relate but I am not that kind of commenter haha but what I WILL say is, if this loneliness was not an issue then dealing with the life of MS would be so much easier but no matter how much support you may have, this is and always will be a very personal battle. A LONELY battle.

  • Devin Garlit moderator author
    3 years ago

    Thanks man! I definitely could have kept going on the topic too, it’s such a massive thing for me, always right there trying to take over. I don’t think a lot of folks realize how big a struggle it really is.

  • Sue
    3 years ago

    Thank you. I used to be called “the energizer bunny.” Now, when I get myself together (it takes at least five minutes to put my pants on and my husband has to put my shoes on over the AFO brace and tie them), I ask myself if it’s worth it. I can’t drink beforehand we go out. My husband has to help me transfer to the toilet. I used to be vivacious,but now I’ kind of quiet because of MS fog. My friends and husband are great, but I feel like I’m not really there. I’m lonely when I’m alone, but also when I’m in a group.
    MS really sucks. I have an easy smile. No one really gets that it’s a facade. Oh well. Thanks for sharing.

  • Devin Garlit moderator author
    3 years ago

    Thank you for reading. I understand and am sorry to hear how things have been going for you. I hope maybe you can use this article as a starting point to discuss what it’s like with your friends and family. Getting others to understand can really help alleviate some of the loneliness. Thank you for commenting and reading.

  • skcullers
    3 years ago

    Thank you sooooooo much for writing this. I woke up this morning thinking how much I miss me. Fortunately, for the first 20 years MS was just annoying , even though I was on disability and unable to work, but in the last 5 it has dominated my life. If I have a good day it seems like a mini miracle as they are so rare.

  • Devin Garlit moderator author
    3 years ago

    Thank you for reading. My first 12 or so year with MS were definitely annoying when compared to my past 3 or so, so I understand. Hang in there and remember we’re not alone!

  • Gordy
    3 years ago

    Thanks for this piece – it’s tricky though, isn’t it ? As for Neurologists – mine specialised in epilepsy, so MS was a whole new thing. You have to laugh at the ironies sometimes.
    The feeling of isolation is horrible, as you say, even with others in support. My physio said laughter is a good medicine. It’s almost too easy to get in a downward spiral with MS, and I hate the chemical ‘crutches’, so it’s a constant struggle to be upbeat !

  • Devin Garlit moderator author
    3 years ago

    It certainly can be a struggle to stay upbeat! Laughter is definitely great medicine, that’s why it’s so important to find something you enjoy. Thanks for reading and commenting!

  • Thomas Bellas
    3 years ago

    Very well said, thank you for this.

  • Scott
    3 years ago

    sure was

  • Devin Garlit moderator author
    3 years ago

    Thanks so much for reading!

  • linda walters
    3 years ago

    I have been seeing someone for help since my neuroligist retired. Every Ms symptom I go in with I am told it may not be ms! Well as person living with it I usually know it is! Very upseting! Seeing new neurologist in June. Just need to vent. Thanks

  • Devin Garlit moderator author
    3 years ago

    Thanks for reading. Sorry to hear that! One of the biggest things I often tell people is that if you aren’t getting good results from your neuro, and especially if he doesn’t believe you, it’s time to look for a new one. The MS knowledge that neurologists have is sadly not all the same and quite frankly, is even lacking in many of them out there.

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