The Hurt and Loneliness of Living with Multiple Sclerosis

I’ve got loneliness on my mind and I’d like to, as the author Elizabeth Lesser says, break myself open.

Please don’t confuse loneliness with feeling alone. They are two separate things:

Loneliness: Sadness because one has no friends or company.
Alone: Having no one else present; on one’s own.

I’m never alone because I’m blessed with a loving husband and son who are unconditional in their daily support of my struggles with MS. Feelings of loneliness are a whole other ballgame.

I was born with a happy disposition, a half glass full kind of girl.

That characteristic carried me through my first decades of life. It was always there to lean on when I needed it. My childhood resembled Opie Taylor’s on The Andy Griffith Show, and despite MS, my young adult life was a relatively happy one. When I reached my fifties MS began taking its toll on my physical and emotional health. I still feel young at heart but my body feels elderly.

I’ve noticed that my MS doesn’t bounce back like it used to. As much I try to keep stress at bay it seems to be winning the war. Here’s a small example about me and stress.

One day I was trying to focus on a positive image before meditating. I wanted to remember what a “normal” day felt like. I sat still and thought. A brief yet foggy image came to mind. I was elated. Then I was deflated.

My image faded quickly into the darkness, gone forever. I was overcome with sadness because feeling “normal” is no longer part of my life. My legs began to tingle from the stress of this great disappointment.

What DOES “normal” feel like?

Many of us take our blessings for granted. They are small yet truly miraculous.

Driving, walking, eating, shopping, exercising, dressing, standing while bathing, planning, chatting, laughing, running, bicycling, feeling physically energized, cleaning, sewing, cooking, baking – oh, everything. Like children we once felt invincible. Strong and vital without a care in the world. MS reminds us that life moves on and that invincibility will never be an option.

The great tragedy of being diagnosed with MS is that we deserved more time to feel normal.

For me, the feelings of loneliness came on slowly. In my twenties, thirties, and forties I peacefully coexisted with my MS. Perhaps it’s because my body responded quicker to medications. I slept better, walked farther and worked out at a gym.

I was also (happily) distracted with the blessing of raising our son. I pushed past my MS symptoms to be the best mother I could be. I’d often think of Jackie Kennedy’s quote to guide me:

If you bungle raising your children, I don’t think whatever else you do matters very much.”

Now that I’m closer to 60 life feels more lonely. My recent exacerbation has dragged on for months. The painful bacterial infection in my small intestine is also no picnic. Together these two battles keep me home most days, except to drive locally (no highways for me) to a doctor appointment or blood test.

All the excitement of life is gone.

I’m doing my best to get out of this funk but it’s not an easy goal. When you don’t feel well life moves on without you.

I’m disappointed in many things:

  • I’m weary of explaining why I need to cancel plans – The introverted part of me detests drawing attention to myself. I’m sick! I can’t walk well! I don’t feel well! Here I am! Unfortunately, explaining is a necessity. Over and over again.
  • The phone stops ringing – This one hurts. People say they’ve been meaning to call, they’ve been thinking of me, they’re busy but thinking of me, their plate is very full, they didn’t want to bother me, they don’t want to disturb me if I’m resting. What stings most are people who don’t reach out at all. They drop out of sight. I know the world doesn’t revolve around me, and people are busy with their own problems. But a thoughtful phone call to show they care means everything.
  • Spending holidays and weekends feeling too sick to go out – The double whammy is my husband doesn’t get to go out either.
  • Social media is filled with lovely posts about beautiful and exciting things other people are doing – It’s been a long time since we took a “real” vacation, went to a show, took a long walk, visited a museum. When you see people doing fun things and you can’t, it hurts. Where IS that fairy godmother to grant me some wishes?

I think I’ve b!@#&ed enough for now. What I want to know is how do YOU handle the loneliness of MS? What do YOU do to make yourself feel better? How do YOU get over the kind of pity party I’m living in? I’d love to hear your thoughts.

I long to return to my usual topics of joy, gratitude, blessings, ability despite disability. But life is not always rainbows and sunshine. Sometimes dark clouds loom overhead. I guess it’s all about how we handle it.

Thanks for listening.

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 (32)
  • JosephKarpinski
    2 years ago

    Hi,
    I feel for you. At 64 with MS, I have many of the same issues. Been retired for four years after being outsourced at 59. MS nerve pain, numbness, bladder, weakness and spasticity issues are constantly with me, from my feet, ankles, shins, legs, and arms. My story:
    https://multiplesclerosis.net/stories/walk-on/
    Walked over a thousand miles in years 2012, 2013, 2014 and trying again in 2017.
    In 2015 and 2016 got into Wildlife photography so spent less time walking.
    It’s hard walking 10 miles or more a day. It’s very hard when you are 64 and have MS.
    I’ve slowed down a lot, and it’s very hard for me to go anywhere or do things with other people. Still I refuse to just give in.
    I try to turn my slowing down into an asset.
    First in Wildlife photography, and then pursuing the passions of my youth by taking free video courses on edX.org, Coursera.org, iTunes U, YouTube, and paid courses from TheGreatCourses. It’s been over 40 years since I attended school. It is so much fun learning how much our understanding of the world has changed.
    And Kindle books are so good!
    It’s a great time to be alive.
    Find your passions, whether music, art, reading, learning, religion, yoga, etc, etc,
    and begin your own journey.
    Never give in. Life is precious.
    Walk on…

  • potter
    2 years ago

    Cathy when I forgot to ask you if your any better. I went through a year when I had UTI’s one after another, I though I was going to spend the rest of my life peeing in a cup at the doctors. Then I read a article of a urologists interview and he said MSer’s could reduce their UTI’s by taking a 1000 mg Vit C at night before they go to bed. The Vit C burns away the bacteria, it worked great for me and I go to the bathroom a couple of times during the night. When ever I feel one coming on a take a Vit C and a couple of Cystex and nip in the bud. I haven’t been to the doctor for a UTI for a couple of years. I only take 500 mg Vit C every night the 1000 mg was to strong. I hope this information helps someone. Potter

  • DMcCarthy
    2 years ago

    I, unfortunately, also live this reality everyday.

  • shaymenae
    2 years ago

    My oh my, I am 48 fully just realizing by viewing 10 years of significant MS signs and symptoms and simply adding 2 + 2, it was not the first stage. Unfortunately, I had a younger doctor and despite my cries and pleas for help, referrals
    1-Five years working with a Urogynecologist due to bladder incontinence with no pills working;
    2-Many years being seen by the best psychiatrist–in and out of hospitals w/o any positive change whatsoever;
    3-Had to plead for Xanax as ANXIETY was taking over my life;
    4-Diagnosed with over active Thyroid which took an absolute miracle to see a doctor that would put me on Armour…the medicine researched the most.
    5-I had coughing and stopped ears off and on for which my prior PCP first had me on cough meds for then finally ended up sendingvme to a Pulmonary Specialist—everything AOK!
    6-Next step CT which revealed nothing but a tiny TINY spot on my kidney.
    7- MRI of Kidney showed a small insignificant cyst which ended up shrinking a few months later.
    8-Was then ordered to go to ENT who said I had I had silent reflex and to take 4 Gaviscon every night….seemed to really help.
    9-Iron was low and got an infusion via Dr. Tomic.
    10-Over the Summer had PT for right knee and back per Spinal Surgeon.
    11. No psychiatrist since mine retired July 2016.
    12. Had 2 different therapists in last 2 years. Both were wonderful but talking about past was way too stressful.
    13. Gone to ER, Urgent Care, Doctor, Spine Surgeon, Continuing with Physical Therapist, saw Chiropractor. Taking Norco 10 mg/325 for pain. Going to Physiatrist on 3/28.
    Pretty much sure I am in the Secondary Progresive MS stage but no Brain Scans or Spinal Punctures.
    Scared to death. I have absolutely nobody.

  • jimtrucker1
    2 years ago

    the problem is to not let it consume ur life

  • kimberly65
    2 years ago

    I am lonely as well because I am in my room most of the time. My husband works and takes care of our eleven year old daughter. And I have to keep Jesus with me almost all of the time as my lesions are on my thoughts, memory, speech, sight, and pain in my lower extremities. I literally go into a crazy place, and it’s not pretty. Then I have all the other symptoms, but the severe chronic fatigue keeps me down even taking my meds.

    I struggled with Faith verses stupid brain No one calls except my sister when she is able, but she has three special needs children, and takes care of our dad. No one visits except my 32 year old son, when he can.

    I don’t leave the house much for the pain seems to always be here, and people stare when you speak because I have to take so many meds due to heart disease, fibromyalgia and seven pages of allergies They look at me like I am a drug addict cuz my mouth is dry, red eyes, and my speech slurs and I forget words and such and my thoughts get mixed up, and I walk different due to pain or Vertigo, so it is better to stay home as kids make fun of me to my daughter. I am thinking if people just forget about me then she will have an easier life.. Oops, I forgot, they already do.

    My heart has been broken a thousand times at least that I am numb to hurt anymore. So it is usually Jesus and me

    I don’t understand why our brain disease is discriminated against. I joined a support group, but most of them were alone, too. I cried for them and told them about Jesus. I told them that it was breaking my heart, so I could not be in the group, but I would be praying for them and if I find any thing that works for me, I would let them know.

    So much more to say, but I can barely see to write.

    Kimberly Adams

  • Cathy Chester moderator author
    2 years ago

    Kimberly~

    Your story touched my heart and resonated with me as well. I wish you could find some joy, any joy, that lightens your load. I’m glad you have your faith in Jesus that fills you.

    I would suggest you reach out to trained MS volunteers who are available 24/7 through MS Friends, a free hotline sponsored by the National MS Society (http://www.nationalmssociety.org/Resources-Support/Find-Support/Connect-with-Peers-One-on-One). Through them you can speak to others who are there to listen and help you in any way they can. These people truly care and at least you’d have someone to talk to outside of your family. Your honesty is private and I think it might be valuable for you.

    I wonder if you are working with your doctor to try and care for some of the issues you list. If not I suggest you reach out to your MS specialist, and if you’re not happy with the care you are getting find another. I hope together you can find medications or alternative therapies that could address some of the issues you are dealing with.

    Perhaps you could also reach out to a qualified therapist for some “talk therapy” which has been very useful to many in the MS community, including me. This is worth its weight in gold for depression, anxiety, loneliness and someone to talk to.

    Thanks for being part of our community and for sharing your story with us. You are valuable to us and you certainly matter.

    Best always~
    Cathy

  • katrina
    2 years ago

    I have been feeling this way alot lately and I’m glad I am not alone in this feeling. Thank you for writing it.
    I don’t have any advice unfortunately. I try to appreciate the little things. But because I still work some, I have no energy for anything else and have no social life and the phone rarely rings anymore..

  • Cathy Chester moderator author
    2 years ago

    Thanks for sharing your thoughts, Katrina. I am sorry you are also dealing with this and wish there was a way for you to reach out to others, if only a phone chat! Do your best and if you’re up for it reach out to others whenever and however you can. As always, we are always here for you!

    Cathy

  • PS98107
    2 years ago

    Great story Cathy!

    There are a couple of things I have done to feel better right away. One was for me not to give in to MS, but to hit back and so I never medicated for it. Instead, I lowered animal protein consumption including dairy down to a bare minimum and continued to try to play guitar despite the fact my left arm and hand were too weak to form chords anymore. I used my affected area more that ever before and for me, it paid off. I still have MS but I don’t notice that disease anymore and I haven’t had an attack since before I changed my diet. I play multiple instruments but I play guitar now more than ever before and now I play with a band once a week. Three of us have MS and our amazing drummer, well he has cerebral palsy. what this boils down to is don’t give up and take back the life you had before your diagnosis. I and others are proof that the brain/body does what the mind tells it to through neuroplasticity or brain-plasticity. You don’t have to be a musician for it to work. Here’s a tune I wrote and recorded solo about brain plasticity. http://music.philsee.com/brainplasticity.mp3 🙂

  • Cathy Chester moderator author
    2 years ago

    Ah, I love this Phil!! Wow. So proud of you playing the guitar and now allowing MS to stop you from living your life. The mind/body connection is very strong. Makes me want to pick up my old flute (still have it from grade school!)

    Keep up doing the great work you are doing, Phil. Thanks for being part of our community.

    Best~
    Cathy

  • LuvMyDog
    2 years ago

    Cathy: Living with a chronic health condition is tough, no getting around that.
    I was diagnosed 35 years ago.
    In my younger years I didn’t let it bother me much, I bounced back from attacks pretty easily.
    I have always been a loner, even as a child, an only child seems to just fall into enjoying their own company much easier than some. My constant companions, my dogs, the best friends you could have.

    I worked for many years, had a few “friends”. We did the usual, out to dinner, lunch, shopping, movies, the casino, etc…. but then, MS attacked much more often and everything changed.

    I am quite used to having to cancel plans, it’s gotten to the point where I rarely make plans anymore. I used to be a very active person but the pain, cog fog, dizziness, took the wind out of my sails.

    The phone stops ringing? I agree.
    I have at this point two people who call me on a pretty regular basis to “check-in” as they put it, to see if I’m still here.
    My close friends who I knew for more than half my life have passed away.
    Another very old friend, she was diagnosed with MS and took it very badly, has become a recluse, we don’t communicate anymore.
    Another so-called friend of many years, doesn’t ask me to go to the casino or the mall or out to eat anymore, she figures I’ll be feeling crappy, in her mind, what’s the use I guess.
    But the fact that she doesn’t even ask anymore, I think very little of her.

    People are fickle.
    People are disloyal and disrespectful.
    People, for the most part, have their own agendas and that, comes first. The he// with you if it takes too much time and effort out of their lives. That’s a fact of life.

    When you’re “healthy”, you don’t look at the world in the same manner as someone with a chronic illness, what a shame. I was never like that.
    When I was younger, I reached out to many who needed help and dedicated myself to a few family members and friends until they died.
    And now that I could use a little help, who offers?? NOBODY!!

    I like the peace and quiet of a solitary life, always have. I keep saying “solitary”, described in one of my Webster’s dictionaries as, a. 1.alone 2.lonely 3.single

    I am not lonely, well, sometimes, just a teeensy bit when I sit and think of those dear friends, both two legged and four legged who are no longer here. Quite honestly, more sad about the four legged ones.
    I am glad I have my dogs, they are far more loyal than any human being I’ve met in decades.
    I keep my mind occupied with my hobbies.
    I LOVE tv and movies.
    I love reading for hours and hours at a time.

    It would be nice to hear my friend’s voice again, saying….”hey, I brought donuts, put the tea water on” but I can’t allow myself to dwell on that because it’s not going to happen.
    I’ve had to adjust. What else can you do.

  • Cathy Chester moderator author
    2 years ago

    People can be thoughtless and fickle. But I’ve also learned that the world isn’t about me so I also call them. It’s a tough world when you live with a chronic illness and I’m so glad you told us your story, LuvMyDog. Because we’re happy to have you here and be a part of your life on these pages.

    I wish you well going forward and hope you find the kindness of others surround you more going forward. You deserve that.

    Blessings~
    Cathy

  • Azjackie
    2 years ago

    I have both lonliness and I am very lonely. I do not have any suggestions as I can’t get out myself.

    I frequently remember back to all I have had taken. That doesn’t help.

    MS is very cruel because it is never ending, painful, and takes away all that you have mentally and physically.

    I too long for happiness. I wish I didn’t have the pity from family and friends.

    I wish my boyfriend was full-time again. In fact he recognized today in his sadness from the weather saying, “it’s like you’ve given up.” Funny thing, I have.

    I know I will never walk, work, or have love and happiness again. But that hurts so bad so I put it in the back of my mind and try to struggle through the day.

    Nothing helps me anymore and I feel it just gets worse.

  • Cathy Chester moderator author
    2 years ago

    Azjackie~

    Oh, I can hear the pain in your voice and I’m very sorry. Yes, MS can be cruel and a dictator.

    I hope you can find comfort in those who love you and want to help. Perhaps you could reach out to MSFriends, a 24/7 hotline manned by volunteers who are trained and have MS. It’s free and you can find out about them on the nmss.org website. They are there to listen and be there for you.

    Blessings to you~
    Cathy

  • remr1
    2 years ago

    Hi Cathy,

    Great story! The same has and is happening to me.

    Loneliness is tough! I never thought I’d be here. Although I’m divorced (a long story), I did manage to create and operate my own business. I think its the only thing that I look forward to. I was about to expand (growing the business and hiring more people) but, that never happened.

    I am fortunate that I can operate the business and grow it to a manageable point.

    Besides that, I’m thinking of getting another dog. I had dogs all my life, I don’t have any dogs now, I think they will be able to benefit me. Hopefully, this will add to curing my loneliness.

    Not to be a hippie, but I am also going to get on my mountain bike and enjoy nature. Hope I don’t fall or wipe out!

    There are things in my head that I’m going to do (travel RT 66, sit by and make a campfire in my backyard, get food to go from a bar and other things.) The idea here is that I am going to try to do “stuff” instead of sitting in front of the TV—-its going to take a little longer but, fortunately, I have the time. Plus, it will take my mind off how MS and past memories (good and bad) affected my life.

    Hope this helps. Hold you head up!

    Mark

  • Cathy Chester moderator author
    2 years ago

    I don’t think it’s hippie at all, Mark! I think your plans sound wonderful. I often wanted to take to the road like John Steinbeck did in his book “Travels with Charley.” And I think nature has always been the answer for me when I’m feeling down or very ill. Being outdoors in nature or with my cats always makes me feel better.

    Good luck with your plans and thanks so much for sharing your story with us~
    Cathy

  • potter
    2 years ago

    I have always been a loner I don’t know if this hurts or helps when it comes to being lonely with MS. I guess I have fewer friends to lose, one time my husband yelled at me for visiting with his friends to long. I told him they were my friends first and he told me they weren’t really my friends because I wasn’t friendly. He is one of those people that everyone knows and like, I am more the wallflower. People find out that I have MS they say they are going to pray for me and then I never hear from them again. Answering questions to newbies on the forums helps me stay connected to people. I have given up on making new friendships, most people are too busy to really connect with someone new. Potter

  • Cathy Chester moderator author
    2 years ago

    Oh potter I am sorry you feel this way. I know those thoughts. For me and my story I’ve seen people who just can’t handle illness or they don’t know what to say. Yes, people stop calling and if I really want to be in their lives I’ll call them. But the phone doesn’t ring as often and, as I said in the article, that still hurts.

    Be who you are, reach out to those you do want to keep in touch with, and I hope you find some joy with those who do care about you. You deserve the best.

    Blessings to you~
    Cathy

  • 1weclbc
    2 years ago

    Hi Cathy, I have been diagnosed for 8 years, I am blessed to still be working, (even though I would really like to retire and train a therapy dog that would bring joy to others, but I have to have insurance), and like you have a supportive family and strong faith. I truly believe that God expects me to do something that might help others cope. We did not have a support group, so I started one in my area and I am very active in our MS Walk each year. You help others by your posts and you should be very proud of that. I have met so many wonderful people who amaze me with their hope; honesty; understanding and determination. You are one of those people! Thank you.

  • Cathy Chester moderator author
    2 years ago

    Thank you for sharing your story 1weclbc and for your kind words about me. They meant so much I read them to my husband.

    I am so glad about your blessings and may you continue to be the recipient of the joy and love you richly deserve.

    Best~
    Cathy

  • vjwebb59
    2 years ago

    I couldn’t have said it better myself!

  • Cathy Chester moderator author
    2 years ago

    Thank you, vjwebb59!

  • giraffe516
    2 years ago

    I too am alone where I live. Parents out of state. I have amazing neighbors who help with things I can’t do…mow, shovel snow, carry heavy stuff. But friends no longer call to include in activities. My walking issues make outings something that needs planning. My long term relationship ended when I was diagnosedn. I work, read, watch TV, and spend time with my dog. He is almost 10 and he is the reason I fight for what I do have. Not sure what we will happen when he is gone.

  • Cathy Chester moderator author
    2 years ago

    giraffe516,

    It’s so hard to be alone but your neighbors sound very caring. Have you ever reached out to them for a cup of coffee and a chat? I’m glad you have a dog b/c animals are the BEST. Unconditional love.

    Thanks for being part of our community and sharing your story. We are always here for you!
    Cathy

  • Michelle
    2 years ago

    I am pretty alone where I live- no family in the state or even close friends. I try to be grateful about what I have- can still walk (kinda) and drive. I still work in my field. But I have always like to be active- being out in nature (forests, not the city parks) is a need for me. It’s where I have always “recharged”, but I can no longer walk to those areas. Hiking, camping, skiing, swimming, biking, canoeing- al of these are things that make my heart soar. All things I haven’t been able to do much because of the MS. MS is slowly killing me on the inside. I can’t find any substititions that help. There are other things that I enjoy, but they don’t make my heart soar and my stress go away. They are all things I could leave behind and do without. The only thing that really helps is my dog. He’s older, so not as active. He gives me the strength to continue in this world. He makes the days better. I don’t go many places without him (he’s not an official service dog-so I always check first). I don’t know what I’ll do when it becomes his time to go. I personally hope that fate is kind and we both quietly cross the bridge in our sleep together- I depend on him that much to not be in a pity party.

  • Cathy Chester moderator author
    2 years ago

    Pets are the absolute best. They are our family and provide unconditional love. I am glad you have your dog. Sounds wonderful.

    Blessings to you and thanks for sharing your story~
    Cathy

  • skcullers
    2 years ago

    Don’t like that I could have written this. At 67 and 27 years into this understand it all. In my early 50s people talked about fatigue, cog fog etc. and used to wonder what they were taking about. I had my foot drop and couldn’t hike anymore and had to use a cane but still felt clear headed and managed most everything. Now every day is a challenge. Have to use a walker for balance and a scooter for distances. Some days just have to call it quits and lay down as feeling like going sideways all the time too . Going out socially is long gone. In bed at 6 watching TV which never thought I could watch so much of. HATE to make any plans as never know how will be feeling and get depressed about having to keep breaking them. This is a very lonely disease. I am happy my kids are all out having great lives. Was 40 when diadnosed and fortunately they were raised as I got worse over the years. Yes, I do water aerobics. I meditate. I see a physical therapist regularly. I see a psychologist too BUT bottom line is living with a chronic health condition takes one down into the rabit hole often. I am shocked when there are moments I feel happy and clear headed for awhile. Feels foreign for a person who was so active, incredibly social , happy and engaged in living. Now feels like a lifetime ago. Wish I could find the secret of reconnecting with the past me but feel this disease has robbed me of that and acceptance is not coming east!

  • Cathy Chester moderator author
    2 years ago

    It certainly isn’t easy living with MS. It tries our patience but what options do we have? We have to try our best, when we can, on living the best life within our abilities. I’m glad you have children who I am certain love you. I hope you can spend some time with them.

    If you need to reach out to talk to someone please consider reaching out to MSFriends, a 24/7 hotline from the National MS Society that’s made up of volunteers who all live with MS. They are there to talk with you. You can find more info at nmss.org.

    Blessings to you~
    Cathy

  • katrina
    2 years ago

    I always tell people this is the perfect disease for a couch potato! I never thought I would be one but its the only way to function…to rest and watch tv. Im often too tired to read for pleasure and the physical body needs to rest. I also used to be very active and that made me happy. How does a previously active person find happiness being a couch potato?
    I just try to keep going everyday hoping something will change and get easier. So far, it just gets harder.

  • Parker 1133
    2 years ago

    “You hit the nail right on the head” I thought you were talking about me with this post.
    I used to be excited about the future now I am scared of the uncertainty.

  • jennyb
    2 years ago

    yep

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