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