How do you cope with the social isolation that chronic diseases tend to impose? As a soon to be 58-year-old woman with SPMS, I live alone with my two cats. As you may recall, I am somewhat estranged from my only sibling who lives far away in another state, and I have few friends. The holidays can be a tough time for everyone, but sometimes I find myself wishing I had more of a social connection.
But I do know how lucky and/or blessed that I am after living with MS for more than thirty years. "I still look so good" (gasp). Of course, that's on the days that I'm not using my cane or maybe, on that day, I have actually showered (LOL: funny not funny). As we age with MS, we are forced out of the workforce due to increasing fatigue, cognitive dysfunction, bladder/bowel issues, low vision and balance problems just to name a few.
Yet, I was dx at the age of 26, and I started tx at age 29, which I continue today. Yes, progressive diseases progress. I am thankful for this MSAA HealthUnlocked site so I can vent my frustrations to folks that get it. I try to stay positive because I am so blessed to be living in the house that I grew up in. Sure, I have limited resources, but I have a roof over my head, and my two rescue kitties bring me much joy.
Sometimes, the isolation gets to me. What do you find helps you when you're feeling isolated? Thanks, in advance, for sharing your tips and ideas. Happy Holidays! 😇🙏🙂🤞🤗😽
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donna0329
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I don't know that I'll be much help, because I'm just reaching this point. I have text and email friends, but my last "in person" friend up and died a couple weeks ago. I'm still mad at her about that, because her life was finally going so well, and we were kicking around ideas to do some traveling together. 😢 I do have family that I see regularly, but they're not people I can pal around with.
It's easier for me, because I've been a lifelong loner, but the best I can suggest is to take advantage of your alone time. Get involved with hobbies that you've always wanted to try and didn't have time for before. If you don't drive, check into organizations that can take you places other than to doctor's appointments. Treat yourself to an afternoon at the mall or a movie theater. Mostly, just find things that you enjoy that can keep you busy. Everything feels worse if you're just sitting there staring at the walls all day.
And keep in touch on here. It's not the same as sitting across the table chatting, but we're real, and we care.
Thank you for your response. I agree with you about getting more involved with things or hobbies now that you have more time to devote, etc. Sorry about the loss of your friend. That's quite tough indeed. Again, thanks so much for your input!
I agree, groups are great, I have a knitting group I’m in with a few ladies in my neighborhood and I love it, even when I’m not in a knitting mood, chatty group.
With the isolation, have you tried videocalls? My mum, my sister, and I would do a 3 way videocall during the covid lockdown. It was easier to catch up with them that way, rather than getting in trouble for being seen, and caught, going to each other's houses 😬 I hadn't yet got my carers, who take care of my social need when husband's at work (he's out of the house 10 hours every Mon-Fri, and I was going batshit crazy being all by myself). Nowadays, our friends come to our house once a week to play Dungeons and Dragons. We've all agreed our house is good, because it's only us 2, and our dining table extends to sit 6 people comfortably. (Was my idea to get that table when we moved in 😅). We did have a dog, Lacie, but because I was home all the time, she developed separation anxiety, and so, when I was out of the house for extended periods, she'd cry 😢 we had to sell her to someone who could take care of that need.
So many good suggestions here that will help many of us. I too am a loner, quite accustomed to a solitary life. I've recently relocated from a rural to an urban setting, leaving behind a handful of friends and all my outdoor activities (goats, hens, and gardens). I'm decades older than you, but I when I finish unpacking and can prove I am a resident, Intend to look into the local senior center which is offering classes in yoga, languages, and many other interests. There may be similar opportunities in your setting. I wish you success.
Investigate options for doing volunteer 'work" with an organisation/s which works or provides services in fields which interest you or which you think are important - I'm talking about charities, not about being free labour to increase some corporate bottom line or profit margin for commercial businesses. Even just doing a few hours at the local charity shop manning the cash register or sorting donations can open avenues for feeling of value again and provide opportunities for meeting new people. Many such organisations can and will be flexible about accommodating people who have some limitations or are not always able to be 100% reliable (which we all know MS can cause). Often doing volunteer "work" will create new connections with people of similar interests and values, and can help overcome that feeling of uselessness that no longer being in the paid workforce can engender.
As others have suggested, take up hobbies or other interests you never really had time for, but in doing so also look for social groups which involved people with the same hobbies - again creating opportunities for new connections. If your mobility is not too badly affected then going to meetings etc is feasible, whereas if your mobility is really bad it becomes a whole lot harder.
You may not get any new "deep and meaningful" BFF friends from doing these things, but it does help reduce social isolation significantly if you can make an effort and find the energy to do this stuff - and then when it becomes enjoyable the energy finds itself to get you there. And you're actually halfway there already by recognising and acknowledging that you are isolated - these suggestions are not a sure fire cure or solution but they are a starting point.
boy, your post hits close to home for me. I'm still working, but thinking about retiring in the next year or two. I have two grown daughters who are supportive, but live their own lives and my only relative (sister) lives 8 hours a way. I can't tell you how many times I've heard the "but you look so good" statement. If they only knew. I'm trying to make plans to combat loneliness when I retire. Volunteering is my main option so far. There is an online support group that I receive links for (but haven't attended yet b/c of my work schedule). Life during covid (living alone in my home) helped me see that I feel comfortable being alone, but I do want to maintain connections to people, like you. Zoom definitely helps people stay connected. Any options for online church?
I’m in the same boat as you with isolation. I have PPMS, but didn’t have progressive symptoms until I was 58. So I feel very fortunate for that.
I know how tough it is for it’s hard to find friends when you can’t be mobile and my family doesn’t help.
I have a beautiful Foxred lab and a very affectionate cat that keep me company. I try to find things that make me happy. For my 60, I had 60 roses delivered and had them all over the house to enjoy for a week. I lost my husband 4 years ago and have this house that takes a lot of my energy to keep up on tasks. Hard to do when you walk like a penguin and slow as a turtle🙂
I try and find good books to read or happy movies to watch. A good move is Daisies in December. It’s about two older people who go to this hotel and find love. I think I watch it 5 times.
Unfortunately, some of the people I have found seem to not want to connect for we have MS. I would never want to be a burden to anyone , but find they are ignorance on what a good life we can have even though it’s limited.
So, having animals as companions are the best for they love you unconditionally and bring so much joy.
Hope I help and it’s nice to have this wonderful forum to connect with people when we feel lonely.
I've been "socially isolated" way before I had MS. In 1999 we adopted our first two kids, one of which was disabled. Several years later we adopted another boy, also disabled. My Life revolved around those boys as there were surgeries, therapies, and fighting the school. It was horrible. My husband is great, but never helped with the boys. I've been fighting for them for 25 years. They are doing as well as can be expected, sometimes even better than expected! I was diagnosed 10 years ago with MS, and this year had cancer surgery. It's been quite a ride, and it's a lot to do when married with no help from him. I had therapy to get my act together enough to tell him how I resented having to do it all by myself.
You can imagine how working full time and dealing with all this, and then my own health issues, has made my world smaller. I have acquaintances but no real friends. We switched churches a few years back (for several reasons) and the one we go to now I have really thrown myself out there, to belong And to make friends. I do have some friends now. It was a very conscious decision to make that extra effort.
I'm not suggesting you change churches, or even start going to one if you don't already go. Are you an artist? Join an artist guild. Like books, volunteer at your library. Take classes at the Y or even just walk the track. But you have to make an effort when you do these things and be extra friendly, like greet people, and sooner or later, people will respond.
well, you covered one thing i was going to say: coming here. it helps so much knowing there are others out there who get it. if you aren't housebound (i tend to go out to doctors only as it takes such a toll on me), you might try meetup.com. it's a website with basically every conceivable interest (of the legal varieties anyway, loll); you can find likeminded people and make friends that way...of course, whenever i go into a situation i remind myself that i even freak out doctors and sort of temper my expectations a bit, but i bet you could find disabled people there, too.
luckily, i'm an extreme introvert, most comfy communicating online, so it doesn't bother me so much. and kitties make everything better!😻🐱🤗
Live in the moment and continue to count your blessings. Recognize yourself full of strength and weakness * JUST BE YOUR BEST SELF! 🤣 *cry . I pray 🙏 this season brings a 🌟 to guide you*us this year. Thanks 😊
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Hello...I'd like to introduce myself
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It's a matter of trust...isolation is a powerful illusion
