Let’s talk about Loneliness – Awkwarrrd!

~ Hope found in M.E.

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It’s a touchy and very awkward subject. One hard enough to accept, let alone talk about. But I’m going to…

Do I feel lonely? At times, yes I do. It’s not something I had any real concept of until my health was scrambled…I honestly didn’t.

(Please click on the title to continue reading. The page break has a developed fault on this particular post. Thanks so much.)

I thought loneliness was my husband being out or away for the weekend, my co-worker being away from our shared desk or work activity, going to a party or event alone, driving alone, shopping alone, living overseas, or walking the dog on my own..actually that last one is solitude, something different…but relevant.

Why this….?

I’m prompted to write on this subject following a brief conversation about loneliness within the M.E. community. If you’re inclined or able to reach out & interact you may be perceived as perhaps stronger, bold or different to other sufferers. Almost immune to what ‘others’ experience…mmmm….No. I guess it takes something, but it also needs your cognitive capacity to be offering a window of opportunity, with M.E. it can be few.

More M.E. folk I connect with on social media are expressing and talking about it…’it’ being loneliness and isolation. Yes, we get lonely…all of the ‘cohort’ do I’m sure to a greater or lesser degree. I dropped that description ‘cohort’ in because I was labelled as that once…one of a tribe of sufferers, who at the time of labelling no one was prepared to treat….lovely! Things haven’t changed much in well over a decade!

Loneliness comes in many forms within chronic illness. My viewpoint is from M.E. Here’s a few…

  • You can be alone within a busy house..if you’re stuck in bed unable to participate.
  • You can be lonely in the same room as others when you’re too tired to join in.
  • Unable to reach out to make that phone call.
  • Unable to read, listen, watch, text, interact virtually or write. Been there. The view from the bedroom window & shadows on the wall have been my friend … & still can be.
  • It can be lonely relying on memories, when it’s such a challenge to build new experiences (other than coping with extreme ill-health).
  • At home alone while family are out participating in a gathering of some kind.
  • An event being discussed that you know is way beyond your capacity…even if you pushed it, risking certain relapse. Now that really is lonely.
  • Or not experiencing understanding or empathy. That can be incredibly isolating & painful.
  • Having to keep explaining.

But the conundrum is that for much of the time M.E. sufferers actually need quiet time, resting & being alone, as interaction in person is just too mind crushingly exhausting.

  • You can be lonely when someone speaks for you or over you. That is at times a necessity & takes a lot of adjustment.
  • Explaining to your GP why you can’t get into the practice.

And the list goes on….I’m sure there are many more that could be added, but this gives an idea.

How is the balance found?

Good question. There is a fair amount of self-management material around (well, if you can read it…I choose small sections & use loads of labels & prompts) … distraction techniques, pacing, relaxation, timers, rest etc…which many of us diligently follow to survive (or sometimes less when it is just too mind numbing), but how can you be distracted from or cope with the often harsh reality of loneliness…pace it? Listen to ‘Here I go again‘ again, by Whitesnake. Can’t believe that just popped into my head!

Or should one simply put a window of anticipated loneliness on the weekly planner? That really is a given. What colour code would it have…blue? Sorry, being facetious. Of course, managing the day takes a lot of time and energy, but there are still those periods of loneliness, some longer than others. Yes agreed, we’re not all ‘people’ people, but we still benefit from interaction.

Here’s a few suggestions:

  • My main suggestion as an individual (& I was helped by a wonderful OT with this) is to express & assert your needs and don’t feel that you need keep apologising for them.
  • Tell someone how you’re feeling…a trusted friend, family member, faith friend. I know, easier thought than said.
  • Connect with a support forum or website eg. Foggy Friends  ● ME/CFS Parents ● Tymes Trust
  • There are several support groups on facebook. Admittedly it is a case of finding one that fits for you. So it may take a while. Here’s some suggestions ~ The M.E. Chat Room ● Christians with chronic fatigue syndrome ● Chronic Creatives
  • Contact a support line, such as is available at The ME Association.

A few suggestions of how people around an M.E. sufferer could help alleviate the feelings of loneliness in someone confined by the illness….from my own experience. This isn’t intended as medical advice, just some suggestions & strategies I have benefitted from…

  • Send a text or email every so often or send a postcard. A letter saying hello or giving local news. When stuck at home, changes can be virtually unknown. Bear in mind a reply may not be possible (especially if it’s handwritten), slow or non-existent, but don’t stop. There’s not always much news to share when stuck in bed or housebound, especially if the limitation is at it’s worst.
  • Interact on social media. If they can post (many can’t), it will mean a lot. It is a window to the world.
  • Bring memories from events they have had to forgo…’Ouch’ I hear you say. But I think it’s important to feel considered…a slice of celebratory cake or treat (if that’s appropriate for the individual), an Order of Service, photographs, a balloon, ribbon, napkin, photo booth prop, a Programme… & a brief rundown. ie. Great Aunt M has finally forgiven Uncle Fred for uprooting the Dahlias.
  • Bring that event to the home with a small set up on maybe a table or other, with the colour scheme or theme…in readyness for the event.
  • But …don’t expect the coping part to come easily. They may be at a stage of building tiny bits of life, for example a craft activity, but they may not & it may cause emotions to rise.
  • Tell them that they were missed by you, loved that they could have… & understand why they couldn’t.
  • Trust their judgement if they say they can’t…they can’t. 
  • Skype could be suggested, but it involves talking, concentration, screens & glare. So this is not likely to be a frequent option.
  • With an M.E. parent (a parent with M.E.)…support them, but be sensitive not to exceed them…it’s already bad enough missing every school, celebratory or any other date on the Calender.
  • Offer to visit. This might mean sticking to a window of 10 minutes between fixed hours where their function is at its most available & will be offered as what they can realistically manage…but however well managed they will still suffer payback.
  • Arrangement made may need to be postponed at short notice, but don’t let this stop you from rearranging at a later date. It’s not personal, M.E. is unpredictable.
  • Could you offer to be an occasional secret Santa or gift buyer for their partner, children & friends? Shopping online or receiving deliveries may not be an option for the sufferer.
  • And most importantly… Listen & stay in touch.

Just a few! I have learned from living with M.E., from trial & error & from the kindness & thoughtfulness of others. You may have noticed that I omitted phone calls. For many MEeps they need to be planned in advance. And if hands free is not an option, a phone has to be held to the ear, responses have to be immediate..etc etc. A text/email reply can be formulated over several minutes, hours or days. Communicating by phone & skype can’t be paced in that way. And as I am sadly aware, for many MEeps talking is out of reach.

This all takes adjustment for everyone, and is a steep learning curve. We are not raised to be sick!

There is definitely a difference between loneliness and solitude (a word I mentioned at the start of the post) it is subtle but also tangible. For me it is very much impacted by my Christian faith. I hope to discuss this in a little more detail in a future post. I hope this post is of help to someone in need & thanks for popping by. 

Loneliness…let’s not be awkward about it & let’s talk about it… God bless. ❤

Penny ~ Hope found in M.E.

1Peter 5:7 Cast all your anxiety on him because he cares for you.

Oh My Soul ~ Casting Crowns

Ps. If you have a prayer need please do leave a comment. It will be added in to my prayer journal for prayer cover. 

39 thoughts on “Let’s talk about Loneliness – Awkwarrrd!”

  1. I can so relate! I have a chronic illness as well, and I am affected by it every day. I am an introvert by nature, but I also need community. The Lord has blessed me with family and friends who understand. I am free to stay in bed all day if I need to or hang out with friends if I am up to it. I agree, there needs to be a balance.
    Thanks for your post!

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    1. Thanks so much for stopping by to comment, Josephine, and for sharing some of your own experience & insight. So good when folk interact. Also great to hear you are blessed with such good support. That’s wonderful.

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  2. You describe different facets of what loneliness looks like. As I was reading through your list it all seemed to direct to a focal point of “Loneliness is life standing still.” All your examples are small ways in which to get life moving, moving at a manageable pace.
    Well said.

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  3. It’s true that having a chronic illness can be isolating. I always try my best to be social, even though I am worn out much faster. But I am grateful to have loved ones who support me nonetheless. I find that growing closer to Jesus has helped me in the loneliness. That and writing! God bless you.

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    1. Thanks so much for posting a comment Emily Susanne & for sharing. I agree with you that writing, and for me the connecting with other writers helps more than I’d realised it would. And without faith & as you say ‘growing closer to Jesus’, I would struggle to cope. God’s Blessing.

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  4. Hi Penny! This is so well thought out and I’m certain it will be a blessing even to those who may not be sick but are lonely for some other reason. Two parts touched me: not being understood, always having to explain and even apologise. Those must chafe. Thanks for sharing from your experience to help others. I love your sunny disposition and sense of humour in spite of M.E. God bless you richly in Jesus’ name.

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    1. Hi Edith. Great to be in touch again. Thanks so much for your beautiful comment. You have given me much encouragement & such helpful tips, which have most definitely made a difference to my writing.
      I so appreciate your empathy & yes, absolutely…I do so hope this post might go some way to help others. God’s abundant blessing, Edith. x

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  5. Oops! I pressed reply on accident. Not sure how to delete that. I was saying I cannot imagine having had this illness before social media. It would have been so terribly isolating. Social media has been such a lifeline for me. Your post is great, so inclusive. It’s difficult not to get frustrated when people stop stopping in or calling, but it also forces you to reach out in other ways. Nice to read that others experience the same things because that in and of itself helps us to feel a little less lonely.

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    1. That’s not a problem, Craftschronicillnessandadulting, I’ve deleted it. xx

      Thank you so much for commenting. I’m so encouraged by the responses on this post. I agree, where would many folk with chronic illness be without social media? I couldn’t use tech for many years & am so grateful that I can now. I’m sorry that you can relate to the experiences mentioned, but glad that we can all reach in support of one another. ❤

      Ps. Do you mind if I quote your comment in my next blog post. I will of course credit you & your blogsite.

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  6. Life is cruel. Faith is a life line. Our future’s uncertain but your words speak volumes. Temporary incapacity is frustrating but long term incapacity is something those who do not have to endure, find very difficult to fathom. Your words hit home hard. There are steps, be they baby ones, that will bring a greater understanding of ME…..thank you for sharing your heart felt words darling sister.

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    1. Thanks Lizzie. I appreciate you popping by to read this. I really feel that I’ve hit on & been led to write about a subject that needs much more air time, for folk with a variety of life restricting illnesses. I’m hoping it gets plenty of shares forward, in the hope it will help someone in need who cannot express it themselves. I so appreciate the support, & yes, the banner for ME/cfs treatment is still madly waving for more attention to be afforded it. Love you ❤ xxxx

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  7. I do not suffer from M.E., but I do uunderstand loneliness in some ways with my own condition, Usher Subdrome, which causes hearing and vision loss (I’m hard of hearing and slowly losing my sight). I’ve felt very alone in dark restaurants with friends who are using sign language. I can’t see in the dark at all, so dim restaurants are not my friends. But for fear of missing out on fun (in my college days), I would go to these restaurants with my friends and eat basically alone because I could not follow the conversation. Thank you for writing about this. Your words definitely apply to other conditions that may put someone in a lonely place from time to time.

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    1. Thanks so much for commenting and sharing from your own experience. I feel incredibly humbled. It must have taken a lot of courage and strength to have shared meals with your college friends knowing how difficult it would be.
      I felt led to write on this subject, I was hesitant, but am glad that I have. As you say, so many conditions can lead to folk feeling alone. Something that definitely needs more air time really. Thank you again.

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  9. Thanks so much for your earnest words. My husband who used to be a super athlete and had a flourishing corporate career has been a kidney dialysis patient for the last 4 years, and I know he experiences a lot of the things you described. I’m saving this post of yours and following your blog because although your illness is different from his, both he and I have much to learn from your faith and wisdom in dealing with your challenges.

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    1. Thank you so much Pia, that’s so very kind of you. I am humbled & am honestly brought to tears at the reaction this post is receiving. I read your recent blog post this morning, so filled with grace… & I relate to much of it, my heart goes out to you both. I hope you don’t mind, but I will add you & your husband into my prayer journal. Thanks so much once again for sharing & for your beautiful comment. Xxx

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  11. Well done! The issues you raise are valid for anyone with a chronic illness. Thank you for taking the time and effort to put all of this together in a concise, logical format. I especially liked your point that even those who are not “people” people can experience loneliness. Sometimes when I make the effort to attend an event, I end up spending all my energy getting ready and traveling to the location. So, by the time I arrive, I have no energy left in which to participate. Those are some of the most difficult times for me. Another problematic situation is when I make the effort to attend (and we know how difficult it can be) but another attendee is unkind. This is probably the most heart-breaking for me. I have a hard time knowing how to respond to discourteous or insensitive people. God bless you.

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    1. Thank you so much Rose. The logical format seemed to come out of nowhere. I honestly felt so led on this one & it all gradually fell into place.

      As always you are an inspiration. I can completely relate to energy being used up just in preparation, before even getting anywhere. And I’m extremely sorry to learn that you experience insensitivity. It’s astonishing. I have also on occasion. It left me lost for words, then wanting to sob & hand a written explanation of how much it took & will continue to once home. All thought whilst keeping a smile going. I don’t think folk actually realise the impact their attitude may have.

      Praying that attitudes & empathy will improve on so many levels.

      Thanks so much for commenting, Rose. Loved your recent post about the paint scenario. You are amazing. God’s blessing to you also. Xxx

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  12. I do not have. ME but often feel lonely, wonder if it comes from losing my mother very young, find it a job to exsplain to any one,

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    1. Thanks so much for popping by to read this Jen & for sharing. I really appreciate it. I don’t think anyone would realise how you feel, coming from such a bubbly person, with such cheery laughter. I’m amazed at how far reaching this issue is. I’m sure I will write more…it needs much more attention.

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  13. Good subject to drag out of the taboo-zone! Hard one to broach, for me, as inextricably linked up with shame. Those of us who are (and usually stay) without partner when illness strikes, and don’t live near family, just have to do our best by ourselves. Wrote text about loneliness years ago for my local M.E. group, to break my own shame barrier; have tried to talk to friends (it’s hard to hear – sometimes I just need to SAY it, then get on with things, but it makes people feel pressured into visiting, which is REALLY not what I want). When I posted a little poem on my blog a few months ago (https://supinesublime.wordpress.com/2017/02/02/textling-o/)
    I found that shame was still the main debilitating factor for me. Easier to talk to the Samaritans! Another phone conversation I had to cut short, as energy runs out very very quickly. And I am someone who, when well, always needed and enjoyed solitude. Loads of it. I like my own company! Only now it’s not a choice, and more or less the default setting. Sharing joys, troubles, hopes, sharing… Used to have periods of three, four weeks without seeing a friend. The postman ringing the bell was a highpoint of the day! Lucky to have carers now, so words are exchanged regularly. And I have a befriender, who comes fortnightly, for an hour. A couple of friends pop in occasionally (as exhilarating as exhausting), but mostly I see professionals. And yes, shame is the operative word.

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    1. Thanks so much for commenting. Apologies for the slow response…you know how it goes!

      I’m discovering that loneliness has far more facets to it than I could ever have imagined. My conversation about it, it seems is just beginning. Thank you for being so frank about it. It is such a harsh part of this chronic illness & absolutely agreed, very difficult to express. Would you be ok to have your comment & blog link/s included in one of my future blog posts?

      Thank you again for sharing your experience. I really appreciate it.

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  14. Thanks so much for broaching such a difficult subject. Balancing the need for social/human contact and the absolute necessity for being left in peace and quiet is very difficult, I find. The only people whose company I can cope with for any length of time are my daughter and grandson, which puts additional pressure on our relationship/s. I’ve recently had to cut back on help in the home because I can barely deal with having someone around, especially a virtual stranger. Needing to be very familiar with someone so I’m relaxed and don’t get stressed (ie ME stress) creates a vicious circle and I’ve had to just back out of it. I can feel overwhelmingly lonely when I’m at my worst, feeling that no-one cares. Thankfully most of the time I can live with it, but it’s always there in the background. Living alone without a partner or even a close friend to share day to day thoughts and occurrences with is the worst. I’m sure this affects so many people isolated with chronic illness or disability, especially the aged. Without my Christian faith I would be severely depressed, I know! Thank you, Penny. God bless you!

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    1. Thanks so much for sharing your personal experience, Alison. I’m so aware that it’s a difficult subject to discuss. I can relate to basically all that you have said in your comment. I don’t live alone, so have the luxury of having someone listen to my vents when really needed, but at times it needs to be a friend rather than a partner to just offload with, it’s not easy is it. Social media can be such a helpful outlet, but I’m with you in the fact that Christian faith keeps me afloat. Thank you again for taking the time to comment, I know how energy consuming it can be. God’s abundant blessing be with you, Alison. ❤

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  15. Hello, I actually stumbled across your page when reading a post you left on another blog post regarding forgiveness and I liked what you had to say so I decided to come check you out! I agree that the topic of loneliness can be pretty uncomfortable :I
    But I like how you put it in such a way to let us know that we all will or have faced it at some point. Thank you for this post because we need to here more topics like this!

    Thasia Awad from:
    https://makemegoodground.wordpress.com/

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    1. Hi Thasia. Thanks so much for taking time to visit my blog and to comment, I really appreciate it. And thanks for your reaction to my interaction on forgiveness, bless you.
      I hope to write some more on the topic of loneliness, from the response I’ve received it’s clear more discussion needs to happen. Thanks again & God bless. ❤

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  16. Pingback: I’ve been discussing Loneliness over at ‘The Unchargeables’ | Hope found in M.E.
  17. Pingback: ME Awareness week 2019… | Hope found in M.E.

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