Content provided by: Healthline
Loneliness is difficult to write about because when people say, “I’m lonely,” they do not always mean the same thing. One person is saying, “I feel emotionally cutoff from people.” Another individual implies, “No one appreciates my ideas, my perceptions.” A third person simply means, “I’m afraid when I’m by myself.”
Whatever people mean by saying, “I’m lonely,” loneliness is usually considered a cause of suffering. For those who have a chronic illness such as MS, loneliness can also be the consequence of suffering. The muscle spasms, loss of balance, vision problems, pain, numbness, bladder unpredictability, all make spending time in the company of others difficult. When symptomatic, being alone can be a relief and burden simultaneously.
Cause or consequence, what is seldom acknowledged about loneliness is its relation to grief. We sense a loss of connection, understanding, comfort, or sense of safety. We long to have what is missing restored but feel powerless to accomplish that. When something important is lost and not easily returned, or is un-returnable, it is normal for us to grieve.
For those with MS, loneliness is often related to three experiences. One is that the illness is often not understood or is misunderstood by others. The second is being unable to participate in activities because of symptom interference. The third Is having to face a shifting self-image or a lost sense of self, which can be terrifying. Loneliness is a natural response to these experiences, especially when coupled with the physical toll of MS symptoms.
The Unasked For Gifts of Loneliness
All feelings and emotions are meant to be felt, even the uncomfortable ones. Loneliness is difficult company but is not an enemy. It is never a punishment, or a statement about who we are. Loneliness, like other unwanted feelings, only becomes stronger if we resist it. When its presence is accepted, loneliness lets us know we are missing something so we can either let go of what cannot be restored, create the connections we need, or both.
Fortunately for humanity, feelings such as loneliness and loss not only trigger our despair, but spark our courage, and creativity. They can bring out the warrior spirit in individuals diagnosed with MS, and in those who care about them. They inspired Dave Sackett, a firefighter who has MS, to tattoo the words “persevere, believe, and overcome” on his arm. Dave’s attitude toward MS is, “It is what it is, keep pushin’ on!”
The loneliness generated by illness not only creates warriors but stretches our compassion. Isolation causes emotional pain but also brings people together. When lost in our unique aloneness, we are strangely with others who are lost in theirs. This means that everyone who has lived through loneliness caused by limitation understands the disconnection involved with having symptoms of an illness. While only people with MS can completely understand the MS experience, countless human beings know what it is to feel stuck and alone.
Loneliness also invites us to be still and know ourselves more deeply. The presence of other people can never surpass the strength and comfort of being content and nourished by our own company. Sitting quietly in our own presence, we eventually accept those things about ourself and circumstances that we would rather not. To be at peace we must acknowledge what is true about our internal and external world, even if those things piss us off.
One More Gift
One final gift of loneliness is its nudge, or shove, to act. Humans are social beings, and thrive when they have meaningful connections with others. Whether in person or via the Internet, being in touch with people who understand our experiences or share our interests is vital for well being. Sometimes, we require the strength of others, and they, ours.
“In everyone’s life, at some time,our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit.” ~ Albert Schweitzer
Content provided by our friends at: Healthline
OH YES IM 53 LONELY in melbourne… WITH MS
George
Reading helps a lot
Wow this hit home. For the last four months loneliness has taken my soul, my ability to make good decisions. I fear that I have lost my mind. I found a person that I so appreciate and wanted to be with because I felt understood and felt like I was human. Sadly I messed up the friendship by lack of boundaries and wanting to much from her. Yes I am married and we haven’t connected in years. Want to disappear like a cold fog in the morning. Thanks for your time.
Thank you for posting this. I am in the middle of a relapse and this helped me a lot!
Debrina, firstly, I love your name. I am also getting (aren’t we all)? I’m 61 and most times, don’t worry about it. I have a strong faith and found out this flare-up I have lots of support – not my daughters, but my fellow MS’ers, church group and another group of friends. Do have any of that? And I still get depressed and lonely – as Celine “Don’t want to be by myself anymore”. Hope you have at least one source of support. I discovered to not talk about the horrors of this disease. People who help me don’t want to be around a “moan, groaning” person. I fond I try to take my visitors hostage ’cause I don’t know when I will have human contact again. You see, I talk too much. Are we allowed to exchange personal info on here ’cause I’d love to talk to you. But I think that’s a no-no. So good luck! Be positive, positive, positive. Just fake it and maybe it will become a habit. Cripes, who do I think I am, Dr. Phil? And I lecture – so many things I have to work on. C’est la vive! That’s life, spelled incorrectly in French.
I find it comforting to have company in loneliness. In a strange way, it stregthens me. Sumer is especially difficult. 101 degrees out and I don’t even want to get the mail. I think you understand. Thank you for sharing that article. This can be a lonely disease, but at leat we’re not alone in our loneliness!!
Micelle, yes it can be very lonely. I always respond to comments like yours by reaching out but I don’t get many responses. You can contact me at the [email protected]
What about when the fire goes out but there’s no-one there to re-kindle the flame. Sad face.
Julie, I don’t understand. You have to explain further.
I am seeking the fire as well, although my partner does not reciprocate in any way i find others that help fill the void for me I am drawn to those i can not be close to. i feel a deep deep loneliness at times and as of late I am seeking help after years of sadness. I really don’t won’t to burden anyone with my issues.
I am in relatively good physical health but a wreck emotional.Peace.
Your words are so elegant and precise. You dig out our heart and connect the dots….thank you ever so much for your beautiful voice! xo
Olivia
Olivia, thank you for your nice words, however it was healthline.com that column that provided this post
THANX yep alone is interesting but I am not sure there is anything positive about it
true you can be alone if you have even 1 person somewhere that cares but what is it if you do not have anybody just 1 cousin …….and loved once left as they cannot deal with it
stanci, that’s one way to look at it! how are you feeling?
Hello to everyone. Yes the subject of lonliness came right on time. I also wish we could all meet up too I believe that would be one heck of a party.I have always been a quiet person and being alone most of the time has never bothered me. For years me and my husband continued our cook outs for the summer holiday until I finally realized everybody was enjoying the cook outs but me it became way too much work for me. So finally this year no cook outs and I was finally enjoying the solitude of not worrying about how my mobility and the summer heat would be while sitting outside in the heat.
I find that there can be a few benefits of this unpredictable disease.
Love yourself and learn to appreciate LIFE, I’m still working on that : )
Angela, I’m working on it too!
Thank you Nicole for opening up to the rest of us. It takes courage to live with this stupid disease and help others to cope.
Eve, actually it helps me cope too!
Nicole you do rock!! And yes thank you.
Jenny, I love rocking, don’t get me wrong. But it was healthine.com that provided this post.
Nichole, a good selection, well written and for me, very timely. I have learned to pretty much cope with our particular type of lonliness over th past 28 years having this disease. I fell into the trap however of blaming every common symptom on my ppms. I have had plumbing issues almost since the beginning. I have experienced a worsening of the bladder and bowel problems as just a ‘normal’ ms thing. As did my Dr’s. I had my annual PSA Test back in October and it came out high. My pcp gave me antibiotics to take care of a possible infection of the prostrate. 3 months later a second test, higher still. It took awhile to get an appointment with the VA urologist, but she set me up as soon as available for a biopsy of the prostrate. That was a couple of weeks ago. The results were available Saterday, I saw them yesterday. All the recent bladder issues should have warned me, I have cancer, of the prostrate and probably more.
We all need to listen to our bodies more. Use the lonely time to do some self evaluation. I have always told others to not blame everything on your ms. It showed me. I will fight this as hard as I have fought my ms, and all the ‘new normals’. For me, a new level of lonliness…..take care.-
Bryan, I am so sorry. I will take your advice. what happens next for you?
Bryan I am sorry to her this as well. I try to remember, “when you’ve got a hammer…everything is a nail”. This is a trap we can all fall into. It’s not your fault. I’m sure you will tackle it with gusto.
Best wishes,
Estizer
“I still love you but I just want to watch this alone right now, OK?”
As my daughter who desperately wants love said this to my wife and I over the weekend, I almost wanted to scream with relief. With her heart condition and intense empathy, she has been on the sort of outside of her peers her whole life, and this question was the first sign I’ve seen from her of being happy by herself, even seeking it out.
Sadly, I find myself ever more unhappily alone. Unfortunately, I mean it in all three of the ways mentioned in the article: emotionally cut off, unappreciated and a little scared of isolation. Yuck. The worst part is lonliness has nothing to do with the number of people around me. True loneliness can be felt in a stadium of a hundred thousand. True loneliness is an internal affair. Who knows, may this is another time to watch and learn from my kids.
I enjoy your blog..keep your insight coming.
Kathy, thanks for reading the blog. I have to admit that health line provided this post!
Yep Nicole , you did it again! Spot on with this topic. I used to like being by myself.. always enjoyed the solitude , being an only child for the first 14 yrs of my life, I guess that just came naturally. Then came MS, and as much as I want my solitude I am never truly alone.. MS will be my constant companion whether I like it or not. I too have been in the Angry place for far too long.. slowly I am dealing with the things that made ME want to be alone..had to really work on that.. so.. thanks for the blog.. and for reminding me that I am not alone in the lonely dept. 🙂
ellajean, yes health line did a great job on this topic! thanks for reading.
Thanks for sharing your experience and strength, Nicole.
Mimi, That’s the easy part!
Hey, I am NOT going to let MS take everything. I am a fine human being, you know, nice, compassionate, attractive “fire in my gut” woman. To hell with you, MS. You’re NOT taking the best part of me: my indomitable spirit!
Just, That was my mantra, I’m not sure where I veered off, but recently I’ve started reading again and plan on attending the book club. So I’m trying…
This loneliness business is particularly difficult for me to dance around. As I read the article, I could FEEL it. At this moment, I am tearing up because I feel the downward spiral of my emotional and mental health starting to make its journey to Negative-Sad-Angry Land. Oh, I forgot self pity. I would like to be water right now so I could evaporate.
Yesterday was the 26th anniversary of me and Mr. MS. Yeah, he’s drained me on every front. He has won today, there’s always tomorrow. Hey, I just remembered nobody is guaranteed tomorrow.
I must end before I contaminate the “everything” of this website and, don’t forget the ripple effect. At least, I am honest.
Just Jackey, Honestly, I can’t remember what that effect is. I imagine The loneliness is hard for alot of us.
You can reach me by email at [email protected] anytime
This may be your best post ever. You nailed the subject of loneliness on every level. You highlighted the burden as well as the gift. Thanks also for helping us all feel less lonely.
Judy, I wish we could all meet up in person somehow.