As many of you I’m sure already know, loneliness and isolation form a very large and intimidating part of this illness. You’re spending so many hours a day in your own head, in bed, wondering when it’s all going to be over, and to be honest, a lot of the time, stringing a sentence together to speak to people is impossible. I remember my family thinking that I was being really rude for not speaking if they asked me a question, when actually it got to the point where I just couldn’t be bothered to start talking, because I knew I’d never be able to finish my sentence. The feeling of not being able to speak cohesively was so uncomfortable for me that I just didn’t talk in an effort to push this feeling away. It was demoralising- I felt pathetic. Ultimately, this side of me was completely removed from the person I was once- the bubbly, enthusiastic, talkative bundle of energy who always had time for everything and loved every minute of it.
So, realising when I was starting to get better that all my friends had lost touch and got on with their lives was harrowing. It was a real universal acknowledgment that I needed to stop wallowing and accept the now. It meant that I had to embrace loneliness in Chronic Illness and accept isolation for a little while, pretty much because I had no choice.
So, why don’t we like being alone?
We need connection as humans, but especially in this illness. We need to know that there’ll be someone there when we holler, someone at arms reach to catch us, to carry us to the bathroom. We need humans as our safety blankets. We need them to tell us that this is all a bit of nightmare and we’ll wake up soon (even though some of our nearest and dearest do this is rather strange ways!) Even if they don’t speak to us, or even if you don’t want them to speak to you, another person’s presence is angelic, warm and reassuring. A validation that other people still exist and lead normal lives while you’re stuck between four walls.
I remember loving weekends during my illness because everyone was at home- even just hearing sounds of people banging around in the kitchen was reassuring and comforting, knowing that I’d have someone to check in on me.
It’s the ultimate sign that someone else still believes in us, even if we don’t. That someone else still holds that flag for you, even if you’ve lost faith in your life. Having our loved ones interfere, nag and fret over us is an outward sign of care, concern and an overall need to make us better, whatever the costs. When we lose all hope in ourselves, we need others to show us the way and remind us of our brilliance.
But, be careful.
Be very careful in your need just to have ‘someone there’ that you don’t bring the wrong people into your circle, those who rob you of your energy, make you worry and stress even more and who ultimately have no faith in you. This can be hard when it’s your family or people you’ve known for a while, but you have to know that ultimately, their concern comes out of anger, frustration and misunderstandings towards your illness, just as yours does when you question yourself. If someone is really zapping your energy, talk to them about it, about how their words make you feel.
Getting comfortable with being on your own.
I’ve spent so much time on my own as a result of this illness that I’m, as sad as this might sound, my own best friend. What I mean by this is that, even though I now have a fantastic network of friends that I meet with very regularly, I’m very comfortable being on my own and I know myself and my own mind really, really well. I honestly believe that this ability to be on my own and enjoy my own company has carried me through and has kept me strong when I lost all hope during my healing. I listened to my inner voice and it carried me through. You lose the ability to do this when you are around other people, trying to please them, listen to them and fight back with wordless arguments. Fighting loneliness now, however deep and scary that bottomless well is, will mean you’ll be stronger for it later, more independent and more joyful in your future life. Ultimately, you’ll come out of the illness fighting, without a need to cling to others or stay small- being comfortable and confident in your own company will let you do that. If you still feel the need to desperately cling to others and to be around people constantly, know that loneliness, little by little, will make you stronger. It’s only in this space that you can grow into your true ‘you’.
I often think that that’s what this illness is here to show us- that there is strength is following our gut instincts, in listening to your inner guidance and in leading your own life.
So, how can you enjoy time on your own?
- Try one of these now.
- Meditate. Meditate like there’s no tomorrow without the fear that someone’ll walk in and brand you a big hippie.
- If you can, write your thoughts down in a journal. Feel the power of just you, pen and paper and the universe.
- Read and listen to audiobooks like there’s no tomorrow. Lose yourself in the company of someone else through words. You’ll learn so much about yourself, and for goodness sake, don’t feel guilty. You won’t have this time again and you’ll be glad you had this time for growth and understanding when you’re recovered and running around like a mad thing again.
You are allowed to feel lonely- don’t push it away. You are allowed to feel that nasty, metallic, hollow feeling and really get into it. There is no shame in this. You are allowed to enjoy the company of others and at times it’s essential, but if you have to be on your own, flick into that self-exploration mode and go there. It’s scary and you might no like what you find, but ultimately, that’s your way through.
Love and strength,
Katie xxx
I have a very supportive husband, and 2 sons ages 14 and 15. I do have friends but they have busy lives and careers, like I did before I became ill. I had a few superficial friendships with a few neighbors, after I became ill, I felt like a pariah, and I had to let one long term friend go. She just did not understand why I could not return phone calls right away and had very great insecurities of her own. My mother is dead(I wish I had her to talk to-( even though I do “talk” to her). and I guess I had that 1 good neighbor friend I could drop in on for coffee . I just dont. I was a very social person, though introverted , before this illness. When I got out of college I felt alone when everyone had a boyfriend and I joined clubs and made new friends. I am 50 years old now and have tried meetup but more than 1/2 of the time I dont show up. I even went to a cfs/fibro “support” group and was scolded because I was late or did not show up!! UGH!! This is in Norheast Philly and is a 40 minute ride through heavy traffic for me. My creative writers group is allot more understanding. I try to get into zen/buddism meditation but so far sometimes all I do is weep. I am very grateful for my husband and my two sons who I am very proud of, but I get so frustrated because I can do less and less.
Susan, thank you so, so much for posting so honestly. I’m sure a lot of people can relate to your situation. I wrote an article here about how to cope with losing friends when you are ill. I found it to be an incredibly embarrassing experience and constantly wondered why other people couldn’t see things from my point of view.
Sending you lots of love Susan- hopefully you can keep joining our little community here for more support. Your husband and boys sound wonderful- xx
Very good article that seems to be worth reading over and over again. I went searching for anything about being alone in an illness. Right now, that’s me. I was diagnosed with cancer and had surgery. Surgery was a success (I guess), but a complication happened after that. Recovering from the surgery just in itself would have been a piece of cake for me. But the complication part of it has made it difficult for me now.
The biggest thing on my mind is that I live alone. I liked what you said about loneliness making us stronger as individuals. But it’s hard for me to deal with not having anyone next to me when I feel down or have a concern about something that I feel. Having another person can be of help when they are there. I’ve had a friend be there with me a couple of nights and it was nice. But there were times he got on my nerves a little bit. But I do cherish him a lot.
The biggest issue I have going for me now (this is the guilt part) is that I got an offer from my sister, who lives far away from me, to be with her during the time of having the surgery and recuperating. I thought that it was a good idea, better than being all alone as I am now. But I pictured what it would be like to be at my sister’s place. My imagination about it was not very good. She has two teen aged kids who have problems and her husband is a jerk. Plus my sister is too motherly and bossy. She depresses me when I talk to her. I felt like I would not recuperate very well with all of the commotion going on and strife if I were there. But it feels better to be by myself, but it does get scary being alone. I feel guilty because I feel like I had made a bad decision. And it’s too late to reverse this. I have a good friend who said that he will be there for me. But it seems like he just can’t get to my place. And then I go to church. The minister there told me that all kinds of people can help from there. No one has done anything for me yet.
Tom, it’s such a difficult balance- we want to feel surrounded by others, but sometimes when we’re recovering, being around people is just too much. I’m sure your sister will understand, and she’s obviously very concerned for you.
Thinking of you Tom- stay open to opportunities for connection.
Katie
Thank you for this post. It is very helpful. The worst thing for me is that I also suffer from crippling depression (although they say you can’t have both that and CFS – I totally disagree). My premenstrual symptoms completely aggravate both and I am left alone a LOT feeling totally powerless, abjectly depressed, and unable to do anything. This frustrates me to no end. I am still trying to accept this. I have not been able to accept dealing with these often week long periods of hell on top of normal CFS symptoms when I have to close the world out and lie down no matter what my hormones or mood is doing. I have not made it a comfy place yet. I am single, getting older, and have not a lot of family, so some of this is terrifying for me. I have learned to have some faith in a higher power and not give too much importance to my thoughts and fears during this time. I try and remember that I will get out of it again for short time periods here and there and that when the energy returns to the amount that it will, I will keep moving forward regardless. I have a very hard time allowing myself to just lie down and do nothing. I am restless mentally, but exhausted physically and mentally at the same time. So I end up pacing around, sitting or lying back down, trying to do the dishes, then not able to do it. I have to just accept that I can’t do anything and learn how to enjoy being couch-bound with a good book or movie. I have to see that I am not completely alone, just hidden away for safe-keeping for a while and that I am lucky my CFS is more relapsing and remitting than all the time. But I still do not have the energy everyone else has most of the time.
Cat, sending you so much love my darling. I’m still one of those people who can’t seem to just sit and do nothing (I’m always sitting down, getting up again, sitting down, up again…), but this advice really helped me. You might also benefit from watching this little video.
I love that you say you are ‘hidden away for safe-keeping for a while’- that’s exactly what it is. You are not alone my love.
I would not say that depression and CFS are separate things at all- in fact, unfortunately, they go together quite well. (Click here for my own personal account). It’s just that sometimes, our symptoms are so bound up in each other that it’s difficult to see where one ends and another begins.
I know this is a difficult time for you my love, but please stay strong and know that I’m thinking of you.
Love, Katie xxx
Your rendition of the experience of CFS and how you grow to know and accept yourself is touching and, probably, heartwarming to a lot of people. But you mention that you have the sounds of other people around you in the house so, even though you are not directly interacting with those people, you have sounds of life and energy, of sorts, around you at least some of the time. What if you live alone and what few friends you did have seem not to understand your situation sufficiently to become part of your recovery, and, therefore, tend to leave you along ? This sounds cruel, but it s a very real situation which I am trying to fathom. Any thoughts ?
Jane, it’s difficult if you’re alone for long periods of time. I was only living at home for a year, so there were background sounds from my family, but I did live away from home after that, so felt quite isolated. This is going to sound a bit silly, but I really enjoyed listening to the radio and podcasts when my brain fog and health would allow me- I didn’t feel quite so alone then.
I also learned to become stronger in myself, especially after friends drifted away (click here and here for more on this). I gradually accepted what I was going through and began to feel more comfortable in my own company- I didn’t rely on others to make me feel ok, if that makes sense? Because of this, I felt that when my health had improved, I was a lot more prepared to go out and meet new people.
Hope that helps a little, Jane- xx