Loneliness: The Worst Effect Of MS And Disability

Loneliness: The Worst Effect of MS and Disability

For a little more than three years now, I’ve been on disability. I’ve already talked at length about how I got here and what it’s meant to me, and some of the effects it’s had on me. One of the big consequences of me being pushed on to disability has been the loneliness I feel. For me, the loneliness is not just a feeling; it’s very real, I’m literally alone most of the time. The longer I’ve been in this situation, the more I have started to feel that being alone so much can change a person.

Now, I admit, I’m a bit of an extrovert. I like being around people, I like talking to people (even strangers), and I like being active in social situations. That said, I’m also someone who’s always enjoyed some alone time now and again. Disability has really forced that alone time: not going into work every day is tough (I should note, I’ve had stretches in my career where I worked mostly from home and didn’t always like that either). Aside from feeling like I don’t contribute to anything, I also have a hard time not being able to interact with actual people in person. So being on disability, plus the effects MS had on so many relationships, including my marriage, it’s easy to see that my interactions with real in-person human beings have plummeted dramatically over the years.

Feeling isolated

Now, I’m not completely alone all the time, I do have a roommate who stays here sometimes (maybe half the week, but at night), and I do try to get out. I try to get out at the very least every Thursday to go play trivia with some friends. So what am I complaining about? Well, depending on how I am feeling and especially the time of the year (warmer months mean more isolation for me), I may only get out that one Thursday night a week. That leaves some significant time to be home alone or at least home and occasionally seeing my roommate. I admit, my dog is 100% my best friend. He’s the Wilson to my Tom Hanks. At least he’s a living creature though, I’m thankful for that. If he wasn’t here and I instead had a volleyball lying around, I sort of worry that I’d be talking to that instead. So why not just get up and go somewhere? Well, I don’t drive because of my MS (with a few small exceptions here and there, Shhhhh). Living where I live, in an area that seems pretty rural to me, not driving can be extra isolating.

Activity on social media

Like many people in my situation, I do talk to others all the time through social media and various instant messengers. I’m probably more active than most on social media because I’m home alone so much (that’s also why I tend to post more pictures when I am actually out of the house. I think sometimes that makes people think I am out more than I actually am; that’s not the case at all, I’m just really, really happy to be out). It’s a wonderful thing to have and I’m so thankful for all of the other folks I’ve met there, but it’s still not a full substitution for meeting and talking with someone in person.

There have been countless studies about how being alone a lot can affect your body and your mental stability. I had intended to include some of that here, but frankly, there are so many it’d be hard to choose. Do a simple web search and you’ll see what I mean. Bottom line, studies have been conducted and have proven that being alone for significant periods of time is bad for us. There is good reason that solitary confinement is one of the ways prisoners are punished, there are also good reasons why some people feel that it’s cruel and unusual punishment.

Feeling awkward around others

I started all this talking about my concern for how being alone so much has been affecting me, so it’s time to get back to that. For one, it’s started to change how I am when I actually do get to be around people in person. I find I’m being a little less extroverted and I also start to feel awkward around people. I feel like the things that I say seem clunky and awkward these days. I worry I may sound like I’m speaking gibberish to them. I feel like I’m also not as great at picking up social cues as I once was. I feel like I leave most conversations a little worried that I said something awkward or weird. Even when I chat with people in person, I can’t help but wondering afterwards if I said something out of place, sometimes that makes me wish I hadn’t said anything, and wish I didn’t even leave the house.

That’s when I do get out. When I’m home, left with my thoughts and talking to my dog, I can get racked with depression and anxiety. Some of it is the disease for sure, but some of it is likely caused by being alone so much. Nighttime, as I’ve mentioned before, can be especially tough. My mind gets crazy at night, and anxiety, fears about the future, and remorse for the past keep me up. Day time can be a struggle too, with no job and no one around, I often get to the evening and I’m left wondering what I did that day. It leaves an empty and hollow feeling. Not contributing to something, anything, worthwhile can really make me question life and what I’m doing and why I’m here. It sucks to feel that way.

Harder to understand and interact

These days, whether it be in person or even when I see and talk to people on social media, I’ve started to feel like I don’t fit. Like I’m an alien visiting another planet. I feel like me and my dog live in this other world that we communicate with and occasionally visit, but aren’t really from anymore. Just the other day, I had some in person interaction with some visiting family and I felt off, I felt like their lives and mine are so completely different. I feel that way with many people. Different priorities, different views, different lifestyles. I’ve started to think that being left with my own thoughts so much has had a detrimental effect on me, and every day, it makes it harder and harder to understand and interact with others.

That’s really it, I think if I had to say the worst thing about having Multiple Sclerosis, for me, is the loneliness it’s caused and the effects that has had on me. I know I have a lot of other readers out there that are in similar situations, and as always, I’d love to hear from you in the comments. Are you alone a lot? How does it affect you? What do you do about it? If you’re feeling alone, as you can see, you most certainly are not the only one.

Devin

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 (40)
  • rachshel11
    1 year ago

    I feel the exact same as You, there are many days I will sit and just cry, and sadly friends and family don’t seem to get it. It’s so hard. Ms is a very lonely life.

  • DonnaFA moderator
    1 year ago

    Hi rachshel11, I’m so sorry that you are feeling down. It is hard when there is no one close who understands. We’re always here for you, and you are never really alone. But I know that sometimes we need that person who can sit down across the table from us and share a cup of tea. You can check out Peer Support Groups and Peer-to-Peer Connections. Never hesitate to reach out to this awesome community when you need us. -Warmly, Donna (MultipleSclerosis.net team)

  • Bettybeem
    1 year ago

    I was widowed at a very young age –
    pre MS diagnosis. Over time I learned to live alone without being lonely. I think this has really helped as MS has taken its toll. Leading a very active professional life to a life with MS limitations was very challenging. I’ve learned over the years to have a list of minimal energy consumption activities which still allow me to be productive. The internet has allowed me to remain socially active with old friends and to create new friendships. I’ve found the use of the internet has also enabled me to find alternate ways to solve some everyday energy consumption activities so I have more energy for more meaningful activities. I do a lot of shopping at Amazon which saves me from going to the pet stores for pet food and supplies, from going to Costco or similar stores for cleaning products, and from going to office supply stores. I’ve recently started getting home delivery for my groceries. I purchase most of my clothes and shoes on line also. I’ve learned that true friends are there and are sensitive to the roller coaster effects of MS. I focus on creative problem solving strategies to resolve MS obstacles. This positive pro active approach seems to be effective for keeping loneliness at bay.

  • msisme12
    1 year ago

    Devin, boy did you hit the nail on the head. I have been out of work since 2008 and it sucks! Being told that I can never do what I dreamed about was like taking a 2×4 to the back of the head. I am an RN and I miss the interaction with both my fellow workers and my patients.
    I too am home alone most of the time. My husband and son are at work and when my daughter isn’t working, she is in her room. It’s an awful feeling that she would rather be in her room than talk to me.
    I don’t have a big family and have been dropped by a couple of friends, so this just increases my loneliness. Some friends don’t understand what I am feeling because of the old “but you don’t look sick”.
    I also don’t drive, so I depend on others to get me places (mostly doctor appointments). I drove once to a place close to where I live and when I got home I was shaking and I cried for two hours.
    I could go on, but it’s just making me sad. Till we meet again!
    Linda from NY

  • Wayneh143
    1 year ago

    There have been periods of my life way before MS when I felt isolated and lonely. Now since being diagnosed in 2008 and retiring in 2016 I find that un less there is some compelling reason to venture outside. One reason is I feel unsure of my abilities, bladder issues and there is nothing in range that I interested in participating in. I’ve joined a couple of workshops and support groups that was not a good fit for me. I have only a few friends, one lives uncomfortably far away, one moved out of the state and One, who lives near my friend who is out of the state, I reconnected through Facebook. My wife is supportive but has things impacting on her that she’s dealing with. Both my wife and my sister constantly try to strongly encourage me to get up and go out. I have no desire to go to the gym we have in the building. I don’t know how I can turn myself around and get better.

  • Devin Garlit moderator author
    1 year ago

    Thanks you for sharing Wayneh143. I completely understand how you feel. It’s hard not to question my abilities when leaving the house. Especially when I’ve had some embarrassing incidents, like falling in front of people, or urinating in my pants (always happens when I’m wearing khaki too so it’s extra noticeable!). It can be hard to get past that, but once you get out there a few times, it becomes easier. I still have moments where I practically need to be forced to get out, I’m always thankful for it though. I try to remember that with MS, we go through some awful stuff, all of the time. We’re tough people. I try to use that when I challenge myself to get out there. I tell myself, I deal with all of this stuff, I can certainly get myself out there. I hope you can too. I’ve also found new interests by just going out and checking things out, even when I thought I’d have no interest at all. Good luck to you sir, you can do this!

  • maxie
    1 year ago

    Devin,
    I am new to this site and find your articles most interesting and enlightening. I have been diagnosed with MS about 16 years ago so I am not a newcomer to this disease. Reading your article about loneliness makes me appreciate all I have and all that I still can do. I can no longer walk unaided but my walker is a huge help and I am so fortunate in having a loving husband who is a retired health care provider himself. I have two adult children and 4 wonderful granddaughters. My kids and grandkids live about 2 hours away; not close enough to come over for a quick dinner but close enough to visit for a day.
    I don’t suffer from fatigue and still have lots of energy although walking more than 20 feet is a big challenge. I am terribly affected by heat so summer is tough but I manage. Thank goodness for air conditioning! I go to an MS physical therapy site for occupational and physical therapy twice a week, I tutor ESL adult students, am in 2 book clubs; one of which I am the facilitator. I go out to lunch with friends and basically have a good and fulfilling life with lot of constraints because of MS. When I read some of these other comments from people suffering from loneliness and boredom, I am so sad for them. I want to invite them over for dinner and conversation.
    I know I may be much worse some day as I was really good for my first 10 years, but went from an occasional cane to all the time cane to sometimes walker to all the time walker. I want to make the most out of my time now cause none of us knows what the future might bring. I try to “play with the hand I’m dealt” and I want to play mine with dignity and grace.
    Wishing all of you on this site health and happiness. With Love, Maxie

  • Devin Garlit moderator author
    1 year ago

    Thank you so much maxie! I really love this line of your “I try to “play with the hand I’m dealt” and I want to play mine with dignity and grace”, so well said and such a great attitude!

  • Hony6Bez
    1 year ago

    You have no idea what a reflief it is to hear someone else, word for word, describe my lonely life. Maybe I’m not so alone afterall. It would be good to actually see and interact with another human person face to face, this I so understand. In three months it will be two years since I stopped working to move in with my dad, 600 miles away from my only real home and communuty, and then he died in February (at 95 years). My kitties of 17 years died about 6 years ago, and I know I won’t live long enough to have another one. I know I must get out to see people, but it’s hard when I know no one. I just wish I could do something useful and help people, like in the job I had to leave.

    I hope I’m not depressing you even more. It is really good to know that there are others out there who live a similar life. How does one get out of the house and be brave enough to meet people, develop meaningful relationships, and feel more like a normal person again? It takes such great courage … God help me to gather and bolster the energy and strength to stay on this planet long enough to find peace within myself, and hopefully with another person, before I pass (in about 20 years).

    Wish I could meet you someday, and I pray you have a human companion to share your life with. You have so much to give.

    Bless you,
    Deborah

  • Devin Garlit moderator author
    1 year ago

    Thank you Deborah, I’m so sorry to hear that you know these struggles as much as many of us do. I hope you can take some solace and know that you aren’t alone in all of this, there are many people just like us. We live all over, but can connect through websites like this. Never underestimate how helpful you actually are, even just sharing your story here was helpful to me and likely many others as well. I don’t have all the answers when it comes to getting out, socializing, and developing meaningful relationships. I do know it’s possible though, it just takes some work. Remember, you’ve got people pulling for you that you don’t even know, we are all in this MS fight together, whether we are actually together in person or not!

  • DonnaFA moderator
    1 year ago

    Hi, Deborah, you are absolutely not alone. There are so many here that understand your experience in this wonderful community. I do understand that is is so important to be able to sit down over a cup of tea as well, to be able to reach out a hand and find another. Have you thought of seeking a local peer support group, connecting with a peer connections or even becoming a peer volunteer?

    And I also understand wanting to share your home with a furbaby, and the concern of leaving them. There are many senior animals waiting to share a cuddle at your local shelter. It might be just the trick to fill that empty space for you both.

    We, of course, are always here for you, whenever you need us. Warmly, Donna (MultipleSclerosis.net team)

  • LyndaL1965
    1 year ago

    Hi Devin- Thank you for articulating your thoughts on loneliness. I completely understand. I especially relate to your words on feeling awkward!

  • Devin Garlit moderator author
    1 year ago

    Thanks so much for reading LyndaL1965! Very much appreciate you taking the time to comment too!

  • weezy
    1 year ago

    Devin, I am sorry about your loneliness, but I do agree that it is the worst thing about having MS. I have been disabled from my career job for four years now and was kept pretty busy caring for my ill husband until he died two months ago. We were together for 44 years. I am being challenged daily with how to have some interaction with another person. Making a short list of phone calls, tasks and short simple activities helps me want to get up, get dressed and stay focused on living. I try to plan some type of get together with a friend or family member at least once a week – lunch, dinner, or enjoying a football game together. It is very hard, but I find when I step out there and make the effort; just a chat with a neighbor as we get our mail, watching a movie at home with my son and getting delivery pizza, making a call to a far away friend makes the loneliness a little more bearable. Hang in there, we ARE all different, we have to try HARDER to connect with people who might be feeling alone too!

  • Devin Garlit moderator author
    1 year ago

    Thanks so much weezy! I like your approach a lot. I rely on lists to get pretty much everything accomplished, there’s no reason I shouldn’t with this too. I need to plan get out/be more social, we all do! Thanks so much for the comment.

  • potter
    1 year ago

    I started realizing how lonely I am several years ago, I tried to talk to my husband about it but he just told me to go out and make some friends. I have never had a lot of friends like he does, I am a wall flower he is the life of the party. He works all day, comes home eats dinner and then watches TV in a separate room. He doesn’t seem to understand I need more human interaction than I am getting. I also have a dog as my best friend and he has a doggy door in the kitchen that he can let himself in and out anytime he wants. I also find myself talking to strangers at the grocery store. The MS forums are a lifesaver, I really like helping other people with their problems if I can. They are also good for venting and getting some of that built up frustration out. Potter

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Potter! I’m sorry to hear that, perhaps you could share this article with your husband and use it as a way to spark some conversation and maybe change. MS forums and social media are an absolute life saver at times. Yes, they have their downfalls too, but it is amazing that we can still reach out and communicate with people without leaving the house, I can’t imagine life without them!

  • Fishel
    1 year ago

    Devin,
    I want to tank you. Someone gets it, really gets it. It could have been me writing that story. I live with my dog & she really is my best friend. I hate ALWAYS being alone. I have been dealing with chronic illnesses since the age of 6. I’ve come to realize that’s all I am, 48 years of not being able to achieve any goals & always dealing with being sick. It really knocks you down. I’ve tried to keep a smile on but it’s getting harder everyday.

  • Devin Garlit moderator author
    1 year ago

    Thank you Fishel! I know how you feel, and while I would never wish it on anyone, it does give me a little comfort to know that other people also understand and get it. We’re all going through this, and even though we are physically alone, I try to remember that there are many others just like us out there.

  • PetieJ
    1 year ago

    Jeez! So many of us who feel so much the same way. What would it be like if we all got together in person!!? I probably wouldn’t show up! I’m alone all day while my husband works full time even tho he’s retired! For a couple of years we were together 24/7 and we liked it that way! When he got this job I went into a deep depression. Alone all the time. And from there, ‘learned’ to be solitary. Sometimes I’ve wondered if I’ve become agoraphobic and I truly think I have! It’s really a catch-22. Too fatigued to take myself out-I’m not one to ‘go’ just for the sake of going. I can’t even get thru a store of any kind. My husband, DJ, does Everything. On a very rare occasion I actually dust a room. We’ve already had the Shower Every Day?!!! chat. I long for a dog again and look at the faces on the humane society site, but then will have a day that I think if we had a dog and he needed to go out, how would I get off the couch?
    I avoid social situations. Tho there are times where I long to see and speak with a real person, I avoid it. I can’t plan ahead for anything. DJ and I can be talking about anything and the moment he stops talking-just one sentence-I have to ask him what he just said. In mid sentence I lose the entirety of subject matter and vocabulary, or use a word in my ‘gap’ that makes no sense.
    What really makes me feel inconsequential is when it seems that no one has noticed. I’ve become invisible. !!??
    I fight depression and do ok for the most part-I do Not want an anti-depressant etc. At least emotionally I can still feel. I wonder what purpose I serve. Anyone who goes out at all, one nite a week, a support group, a store and talk to strangers, somehow that makes a difference to them as well as what it does for you. The only time I go out is to a doctor’s appointment. Thankfully, DJ always goes. He’s my memory, but at least he involves himself and does everything he can to help me, tho there are times when he just can’t. It weighs on me, all the things he does for me, for us; he reminds me that if he was the one needing help, I’d be caring for him. It’s true, but it doesn’t make me feel less of a burden.
    I feel that my social anxieties have changed his life dramatically. He won’t go anywhere without me. At least his job provides him with coworkers he enjoys, for the most part.
    But, alone. I’m always so grateful when DJ gets home, tho he’s so tired he’s not exactly “company”. He will literally fall asleep as I’m talking and he’s appearing “interested”.
    On one hand, there are things I want to do, places I want to go, but given the chance, it’s not in me to do it. Usually when I think of the physicality of getting ‘real’ clothes on and just getting out the door, I’m done!
    I really appreciate your insight Devin. That you open the door wide for the things we think of but don’t ‘say’, letting us know we may be alone, but I say, not in Spirit.

  • Devin Garlit moderator author
    1 year ago

    Thank so much PetieJ! I’m so sorry to hear of your struggles. I understand them very well. I’m very happy to hear about DJ, he sounds amazing. I appreciate you sharing your story, as you said, we may be alone in practice but not in spirit. I hope all of us sharing that here can try to remember that when we feel at our worst. That’s what I’ve been trying to do. Does it solve all of my problems? No, but there is something just so comforting to me to know that others out there actually understand. I don’t have a lot of great advice, but, I can tell you that I do honestly understand and that I hope you keep up the good fight and remember that you aren’t alone, there are many of us going through the exact same thing.

  • Tazz
    1 year ago

    As an introvert who worked in a busy and demanding job with a lot of interaction with people I used to cherish my time alone, I even used to resent it if the phone rang -“who is that who dares to interrupt my solitude?”. A very limited social circle (through circumstance) and no family support didn’t bother me particularly, except when I needed some physical assistance with something I couldn’t do, and even then I’d often just work out some way around the “problem”.

    Now, with health issues including MS meaning that it is mostly just me and the four walls, my life is rather different. I have found myself going to the supermarket (or other places) to buy things I don’t need, just to get out of the house and see some other humans. I love my two cats dearly, but they don’t always have the most interesting conversations – it’s mostly around “when’s dinner being served?”. I’ve found myself talking to strangers in shops and other places. When I’m with other people I seem to suffer from dreadful and embarrassing bouts of “verbal vomit” – I just can’t stop talking – because it may be days since I’ve actually spoken to someone.

    I’ve realised that it comes down to the simple and distressing fact that “solitude is by choice, but isolation is imposed upon you”.

  • Carol
    1 year ago

    Hi Tazz, I had to laugh at your mentioning that you would go to the supermarket just to get out of the house and see people. That is me. These four walls get to me, I hate this loneliness and boredom, and can’t wait to get outside. Now, I am unable to go anywhere. I regret that I don’t have a cat now to talk to and help deal with the endless hours and be able to talk, even though it is just a cat. I still long for those days of going to work every day and being useful and have some kind of meaning to my life,

  • Devin Garlit moderator author
    1 year ago

    Thank you so much Tazz, I really appreciate your comments. It’s such a good point you make. There is such a huge difference between being alone and being forced to be alone.

  • fnredmond1
    1 year ago

    Thank you SO much for putting into words all of the things that I have felt since being forced to stop working. Although I am married, I spend much time alone. Well, I’m not really alone. I have my Silky Terrier best friend. Her name is Lilly Munster.

    I am a retired judge and am an attorney. I have always been an extrovert, but like you, feel as though my personality and my relationships have changed. I feel “out of the loop” when engaged in the seldom discussions that I still have among my colleagues. The same things and issues that I felt were important before I had to stop working no longer seem as important.

    I have come to realize that many of my “so called friends” are just acquaintances. I saw many of my “friends” on a daily basis when I was working and attending legal functions. Now that I am home alone most of the time, I can count on one hand, the number of visits I have received from these people. I admit that I have turned down visits on occasion because I don’t feel well or am too fatigued . And, because it is hard to make plans even a day away, eventually, many people stop bothering to visit. They can’t afford to keep making the time to visit, only to be told at the last minute not to come. Invitations also eventually stop coming. I must say, even if I can’t make it to an event, it would still be nice to be remembered and asked.

    But, for the most part, Lilly Muster and I have discussions that involve everything from the latest news (that has been horrible if late), to things and people on T.V., to my frustration with technology and my ability to type and use carbon paper—not Snapchat or Twitter, to my opinion on the latest legal decisions. Lilly and I discuss just about everything, even though I’m the only one talking!

    Speaking of talking, I also suffer from the ability to find the right word when speaking. I will often have to stop mid-sentence and try to grab that word from the depth of my lesions brain, or try to describe the word I want to use. Many times, the person I am speaking to can fill in the blank, or the rest of the sentence. I find that symptom is MS very frustrating since attorneys make their living using the the verbal and written word.

    I have the same frustration when someone tells me something, and my brain has a disconnect and seems to store the thought in an area of the brain that has yet to be studied!! I then have to ask that the thought be repeated to me. It can be during the discussion or at some point thereafter. The speaker then may believe that I was not being an active listener, when in fact I was listening more intently because of my MS. But, the thought got lost in the abyss of my brain. I leave the conversation frustrated and angry at MS and what it has done to my cognitive abilities.

    Social media helps in that I can take my time responding to people. I don’t have to have the constant stream of words exiting my mouth as I do when having a face to face conversation. I can stop and try to find the right word, or remember a thought before responding to someone on social media. While Social Media keeps me connected, I still want to see who I am talking to, and who else may be in the room. I’m not that old, I’m just old school!

    I could write a book on fatigue and how that has affected my social relationships as well as my relationship with my husband. Half of the time, I ant tell you the date or day of the week. Not interacting with the outside world seems to make those things unimportant.

    MS can, and does, affect each one of us SO differently every minute, hour, day, week, month and year. But, we do have one thing in common. That is change. We have no choice but to adapt. Because, until there is a cure for this horrid and totally life altering disease, we will have to deal with what it throws at us. That includes learning to live with loneliness and loss.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much for reading and sharing your story 1refkpt. I understand many of your issues all to well. My cognitive issues, in particular, have been extremely hard on me: https://multiplesclerosis.net/living-with-ms/my-cognitive-changes-because-of-multiple-sclerosis/ MS is 100% about adapting, we face constant change, but you are right, we can and must adapt!

  • PVANN
    1 year ago

    This is something I struggle with too. I am lucky that we were able to move to an area where I can get a few places on my scooter (library, grocery store). I do drive locally when I am doing OK, but I have to admit that my driving skills are subpar. I am an extrovert, and also deal with the feeling that I am not adding much to the world. I live with my husband, who is wonderful. However he likes to play multi-player video games, read, and tinker – all more solitary activities. Earlier in my disability I learned to weave, and that helps fight the boredom. My dog helps a lot. I do go out with friends Thursday evenings (Thursday must be the magic day) if I feel well enough. Cognitive issues caused me to out on disability years ago. I am very up front about that issue when I am with friends. They know I miss words, or lose the thread o the conversation at times. I tell them what is going on, and they will fill in the word or remind me what is going on. One thing I did was start a book club at our local library, and made sure that I have a co-leader for when things get rough. The book discussions seem to provide an adrenalin rush, and I come home happy, but exhausted. The group meets once a month, and I look forward to it.

    About the night time – I do take a sleeping pill. If my mind is racing I do some deep breathing meditation exercise. It does help turn off the ever circling thoughts. I am sorry you are going through all of this.

    I am in my sixties now, and more and more of mine friends are losing their hearing, in constant pain, or having trouble cognitively. Seems at this point I fit right in.

  • Dimitri
    1 year ago

    I feel your pain.
    I have shut down socially because of this disease. I hate having conversation with people because I feel like something is being lost in translation. When I first noticed this problem I would ask people whether I’m making sense. That is the most awkward feeling in the world. I read an article awhile ago about how people with MS have problems picking up social ques. That’s me!! It’s embarrassing. To make things even worse, I’m no longer able to read because it exhausts my brain. I used to read a lot. And I can no longer watch movies because I’m mentally slow and it takes me awhile to follow what’s going on.

  • Devin Garlit moderator author
    1 year ago

    Thank you Dimitri! So sorry to hear. I understand that awkwardness all too well.

  • melack01
    1 year ago

    Unlike you, most of my life I have been an introvert. Between being in the military and my husband, I climbed out of my shell. Now I just want to crawl back in. I have cognitive issues plus PBA that make me uncomfortable around people. My husband sees it and says it doesn’t matter but to me it does. I try to be quiet and not interact much which makes me feel so alone even if I’m in a group of people. I no longer drive (though every now and then I get the urge but the knowledge that to me it looks like everyone is going to crash into me). I feel lonely and worthless since my disability is denied, and I don’t feel like I contribute my fair share. All my husband gets is social security and we are really struggling, selling possessions to get by. I do manage to cook dinner most every night though with some cussing and crying when I can’t remember how to do something or what order to do things in. The dark side of me just wants to leave but my husband insists he loves and needs me. Yes the word lonely may as well be listed with the other MS symptoms.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much for reading and taking the time to comment melack01. I’m so sorry to hear of your struggle. I understand all too well what you are going through. We’re not alone, it’s hard to remember that, but it’s true. There are many people in our shoes. My friends and family say the same as your husband, don’t be uncomfortable or embarrassed. It’s hard not too, but sometimes we have to trust our loved ones. Never discount how much you bring into someone else’s life, no matter how you feel!

  • CatDancer
    1 year ago

    Yes Devin, I feel you on this. I found it interesting you brought up the nighttime period… Oh man, I wonder if I’m going to completely lose my mind and turn inside out during this time. And then, if I can’t fall asleep or concentrate on anything then I’m in a perfect storm. I was talking with my therapist about this today. I live alone and have for the majority of my adult life. Now I don’t know if I could even handle a roommate, I give you props for that. I want to be around others and crave that interaction but I’m not always 100% present, and now as I’ve been hit with MS harder, my relationships with most of my friends are bizarre. Ever since I started receiving disability benefits I’ve felt like I’ve had to traverse two different worlds, and make it appear seamless and hidden. Although now, the seamless part is messy and hiding it is no longer a priority.
    Sorry for this rambling response but I hope you get something from it. I always learn from you. Peace, Leigh

  • Devin Garlit moderator author
    1 year ago

    Thank you Leigh! Sounds like we have a lot in common! I find it easier to not hide anything and to try to embrace what I’ve become. I hear you about night time though, I feel like I am such a mess when it’s night time!

  • kmackey
    1 year ago

    Your story sounds just like me. I’ve been out on disability for 3 years now and everyday is so lonely. By the time my family gets home on worn out and go to bed. My dog is my best friend too

  • Julie
    1 year ago

    I had a beautiful German Shepherd for 14 years. She saw me thru some really rough times, my DX, a divorce, loss of a parent. Then 2 years ago she took her last breathe here on earth. I guess if I were to feel loneliness, it will be since she died. They really are great companions.

  • Devin Garlit moderator author
    1 year ago

    Thank you kmackey! That certainly does sounds like we are very similar!

  • Jbarksley
    1 year ago

    Excellent, Devin! Spoken for a lot of us. I do interact on-line, at chats and at church but nothing ‘significant.’ Still waiting on my SS Disability approval so lack of funds doesn’t help the situation. At the end of the day I find enough possitivity to find some laughs and hope. The sun will come out tomorrow.

  • Devin Garlit moderator author
    1 year ago

    Thanks you Jbarksley! It can be hard to remember, but you are right, the sun will come out tomorrow!

  • cgibson70
    1 year ago

    Thank you for letting me know I am not alone. You eloquently put into words exactly how I am feeling. Right down to taking an overload of pics when I go out because I don’t know when I will make it out again. Thank you again for sharing your experience so those of us living the same life don’t feel like we’re the only ones.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much cgibson70! Appreciate you taking the time to comment, I have a feeling there are many people just like us!

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