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Coping when unable to work (Part 3). Friday January 10, 2014

Keeping self worth levels buoyant when unable to work due to poor health can be a daily battle. Here are four 'don'ts' and one 'do' that sometimes help me. Please share anything that has helped you to stem the tide of hopelessness if you are unable to work. Remember, encouragement is like a peanut butter sandwich, the more you spread it around - the better things stick together.

DON'T explain yourself. I live in perpetual fear of the following question: "So what do you do for work?" My face flushes, I stutter and stammer and before I can stop myself blurt out explanations and half sentences. It's excruciating (for them as well as me), and the more I explain the less I feel understood. Be prepared for the question. Keep it simple. Smile and try something akin to "I'm not actually working at the moment but in my spare time I'm enjoying learning French/playing the bassoon/cooking soufflés..." This shifts the conversation into a different direction, switches it back to positive and to you as person. (We are all, after-all, more than a job title.)

DON'T lose contact with friends. This can be a tricky one. We may feel our contemporaries have moved on and couldn't possibly understand how we feel. And yet, isolation can produce sickness in itself. Invite someone for a cup of tea, make a phone call (a tough one for me!), write a card 'just to say' or fling someone a text.

This may mean putting a limit on how much we talk about our health complaints and disappointments. Just as a job title doesn't define a person, neither does our illness. The best vitamin for making friends? B1.

DON'T lose your sense of humour. This will make it pleasant for folk to be around you but conversely it will do you good too. As Susan Milstrey Wells says, an author who is chronically ill herself, "laughter, unlike some other remedies we try, is completely safe, nontoxic and fun. All we have to lose is a bad mood."

DON'T rule out voluntary work. There are some weeks when it is simply not possible but on the weeks it is, it gives me human contact, self-esteem, forces me out of the house, keeps my thoughts in perspective and, arguably most importantly, gives me the scientifically proven "helper's high".

DO pamper yourself. This is the hardest for me. Because my illness demands so much sleep and rest, I feel that every wakeful hour ought to be spent doing, accomplishing, giving or making. It's undoubtedly Guilt at the wheel here and Guilt does not allow for "me time". This, of course, is erroneous thinking and can worsen symptoms or lead to a depression. So give yourself some respite, indulge in the things you enjoy; a long bath, reading a book, watching a good film or, if creatively inclined, allow time for this. If you are able, go for a walk, take a date with yourself, sit in your favourite cafe, visit an art exhibition.

This is all very much ongoing work in progress for me. In fact, I think this past year I've struggled more than ever to accept my limitations. I still ache to earn my own daily bread, even if just little crumbs. Joseph Campbell said that "the privilege of lifetime is being who you are." So, despite being unable to work, we each have our own unique gifts, qualities and attributes to offer those around us, enabling us to add our own personal stamp of beauty on the world.

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Anonymous Fri, Jan 10th 2014 @ 9:15am

Thank you for this wonderful and helpful blog :)

Melanie Lowndes Fri, Jan 10th 2014 @ 9:22am

Dear Suzy, I have found it moving to read these three posts regarding coping when unable to work and it makes me feel how grateful I am for health. One thing I thought today was about being retired and how many of the same pointers apply - even being self employed it is important to keep a routine and to take time to rest/enjoy oneself also. I am doing something special at the moment which I took on because I felt down and I thought it would cheer me up - it is with a lady I did a weekend course with last year and I have been appreciating her inspiring weekly newsletters ever since. Her name is Sally Canning and for January she has set up something she calls "28 days of gratitude". It cost £67 but it is so worth it. She sends out inspirational things each day, you as a participant record 3 (or more) things you are grateful for each day (there are also mindfulness exercises) - the best bit is that she has set up a group on facebook so we are all sharing this with each other. I am feeling more cheerful and more confident (eg at expressing my true self in the group and also about confronting people about issues in my daily life) - I am really quite surprised at what a change it has made - in four days! It started 6th Jan. Her web sites are and She only works with women so far as I can tell ... sorry guys but her newsletter can still be good for you and maybe she will make an exception who knows. (And if you fancy this I don't think even at this stage it would too late to join this programme.) Love, Melanie

Anonymous Fri, Jan 10th 2014 @ 9:45am

I SO know that dreaded question What do you do? I live in fear of it, at every social occasion and exactly as you say, the more you try and explain the more awkward it gets, I end up wanting to disappear so as a result I avoid social events. Not good. I think to be able to say simply as you suggest "I don't work at the moment but in my spare time I do such and such" is great - it keeps it simple, avoids justification and embarrassment. However, it takes some courage! I have low self esteem and feel perpetually guilty over not working/not having a family etc. Yet why can I not hold my head up and see myself as valid in this world? There are reasons why I don't work and my life is a far cry from a "lady of leisure". I was stumped recently when someone responded "oh lucky you to be in that position!" in such a strong way I felt obliged to correct their wrong perception. I don't think they would really envy my daily experience if they did but know the truth. But all my correction did was bring the conversation to a full stop. They looked awkward, I felt mortified, and of course I ended up thinking Never Again.... so its very heartening to read of others experiences of this conundrum. Thanks Suzy!

Susan Carroll Fri, Jan 10th 2014 @ 9:49am

Thank you so much for writing these posts Suzy. They really helped me. Having been off work with depression for over 2 years I am struggling with these issues particularly the inner judge that keeps telling me I need to be more productive, even though maintaining my mood is a full time job especially combined with parenting two children which sometimes I find extremely challenging. I am glad too that you said you find phone calls difficult, even when I am not feeling particularly low, I don't answer my phone a lot of the time and very rarely make a phone call.


Gerry Fri, Jan 10th 2014 @ 9:52am

For the first time I have had someone post comments which are extremely close to how depression was exacerbated and caused the more unpleasant side effects on me and my life. I have noticed Suzies comments before and have thought ok, but what about.... This time, with these last three comments, I thought, at last, someone is saying what it is like for me !
On the last one I have two comments where I think that maybe it is different for men.1. "Don't explain yourself" This may sound old fashioned but generally men (particularly in areas of relatively low unemployment) are regarded as skivers if they are not working and on the face of it look "fit", all the more so if to have any company we go to the pub occasionally in the afternoon.
2. As is said at the end of many comments, "get enough sleep". My depression became unbearable when I injured myself in a series of accidents, and have chronic pain in various parts of my body, so not only my head but also pain conspire to fragment and deny me any more than 3 hrs a night(even though I go to bed as early as 6.30 and at this time of year may not get up until 8.00 am)

Nice one though Suzy, you are the first to elicit a comment from me. I hope you can get to accept your limitations, and find some way of fulfilling youself as you are now.

Anonymous Fri, Jan 10th 2014 @ 3:39pm

Dear Suzy. Thank you so very much. Your words of wisdom have resonated with my life. Your insight has brought me comfort and the encouragement to see the positivity in my life. Xx

Julia Fri, Jan 10th 2014 @ 4:00pm

Suzy! Your three blogs about having to give up work have been wonderful. Thank you. I have so much to say about it all that it would take days to tell. I remember reading a novel soon after I finally stopped work called "So What Do you Do?" (I'll try to find the details) which made me laugh but it was serious too. There was also another title which helped, a factual book whose title escapes me but was something like, you are not your job. I love your Joseph Campbell quote and also I find telephoning people so difficult.

Anonymous Fri, Jan 10th 2014 @ 4:07pm

I too struggle with phone calls, and always have done, especially to family members,. I think one of the reasons is that it is difficult to disguise emotions as portrayed by your voice, and have adopted a "bright and breezy" tone to hide my true feelings. In addition, my memory for things said to me is not brilliant, especially as I am putting all my energy in to the "bright and breezy" act. Whilst e-mails for some people are less personal, and can so easily be misread, I nevertheless prefer them as I have always got something to refer back to, if I need to mull things over.

Julia Fri, Jan 10th 2014 @ 4:11pm

Hi Gerry. Your comments are very interesting. I can see now how it might be different for men having to give up work. I never thought of this before. Men are traditionally the stronger sex and the providers..sounds bit out of date I admit but I do think these thoughts still hold true in some mens' minds and society in general despite being un PC. I do sympathise and also with your sleep problems. I have written before many times on Moodscope about my lack of deep sleep most nights and the awful effect this has on my mood during the day. I had a bad night last night!

Anonymous Fri, Jan 10th 2014 @ 4:42pm

When doing CBT I was asked " do you think children and older people have no value because they don't engage in paid work?"
Well my answer to this is of course they have value, so it follows then that I too as an adult non worker have value too. This has stayed with me for many years and helps my belief in myself. It's a good way of thinking for folk like us, no?

Julia Fri, Jan 10th 2014 @ 4:48pm

I am so happy to read that others don't like the phone. I much prefer texting and emails. They say that Nokia produced the mobile for the Finnish people who are naturally shy and find one to one communication and socialising difficult. Something like that anyway!

Anonymous Fri, Jan 10th 2014 @ 5:13pm

Oh Julia I am sorry about the bad night - maybe a "one off" ... do persevere with the ampytryptilene. Frankie

Julia Fri, Jan 10th 2014 @ 6:33pm

Hello Frankie. I am definitely going to persevere with the ampytryptilene as overall I feel so much better taking it. Also I have more good nights than bad being on it. I did send you a message the other day on Peter's blog. Maybe you have seen it. I hope you have survived the first week back at work? Thanks again for all your help.x

Annie Fri, Jan 10th 2014 @ 8:58pm

Suzy, I have read your blogs every day and especially love this last one. It's exactly what I do to keep myself going. Some days with my MS it would be so easy to just stay in bed. I figure if I get up, shower, get dressed, put my face on, I'm ready to face the world. Never mind, that I sometimes get ticked off that people tell me how great I look when I'm actually feeling like crap. I work hard at looking good and I haven't worked in over six years.

Having said that I have just finished a huge project which is going off to the printers in Hong Kong on Monday. I have designed a set of E-motion Cards for children which has already been pre-ordered to go into schools. This has been my project for the last 8 months, and I know it's going to be a big success. I feel so good about it!

For all of you out there not able to work. Find something you love doing. Study. Have a thirst for learning new things. Our world has a lot to offer. Find your bright spot and hold it in your sight.

The one big thing I always give myself is pyjama days. I have a whole day every few weeks where I don't get out of my pyjamas and I just rest at home. I have learned that I can "do" in the mornings. Afternoons are for resting.

Thank you Suzy for these wonderful honest blogs!

thesleepysoul Fri, Jan 10th 2014 @ 9:01pm

Dear, dear all,
I want to thank each and every one of you who have commented (especially if for the first time), over the past few days. I was so anxious about these posts that I actually emailed Caroline wondering if it would be best to leave it. I wanted to bottle out!

Your comments, suggestions and wise words have heartened me more than I can express. Again, at the risk of sounding trite, I've read them all with tears in my eyes.

In fact, your comments have even given me the courage to perhaps repost the 3 posts on my own blog, something I just wouldn't have had the courage to do a few days ago.

On the 7th August, last year, I wrote a post called 'You're Hired!' It was pondering the question of what true "success" is. Even though I wrote it, I've realised this week that in actual fact, I've not truly believed it.

Please believe me though when I say this: Your comments have given me such strength and really soothed my ever contorted, anxious mind.


Suzy x x x x x x x x x x x x x x x x x

Deragonflyz Fri, Jan 10th 2014 @ 11:00pm

Reading this just makes me laugh...I relate to so much of what you say. I think even that in itself can be healing. Finding a group of people who know where you are coming from. Not so much talking about your pain, but not feeling like you have to hide it because most people just don't "get it".

I tend to avoid talking about how I'm really feeling. This leads to isolating myself completely, because I'm sick of feeling like a fake. And it's not that I want to talk about how crappy I feel, just that if I need to go home because half an hour was just enough for me to handle, I don't want to feel like I have to explain myself. Or for people to think I'm being rude if I don't. It becomes a viscous cycle.

I have a handful of people that I have sat down with and had a good deep and meaningful conversation with. Laid it out there and said, "This is how it is". If you've never read "The Spoon Theory", look it up. It describes chronic illness beautifully to those who don't understand. It's perfect for sharing with friends before trying to explain. Now I know that if I go out for a coffee with these friends, lose my energy and have to head home, they won't expect an explanation...they just KNOW!

As far as a job title. I'm an artist. That makes it easy. People don't expect you to be "working". It's not a job. It's who I am. So I will always have creative ideas running around that I can run with. I try to maintain this side of myself as much as possible. It's like losing a part of your soul if you stop being creative. Even if it's only in your imagination. Tapping in to this also offers me the chance to potentially make a little money too. Now when you can't work a regular job, anything is better than nothing. The beauty of the internet is it makes it easy to promote your work from bed if need be.

Even if you're stuck in bed, get on facebook and be social!
I don't care what anyone says about it, for people with chronic illness, it can be
a lifeline to the outside world you may not otherwise have.
Use it! If you have no support network...find one!

And yes, pampering yourself is soooo important. I used to struggle to sit and watch a movie because I'd be distracted with thoughts of cleaning the house.
Now I allow the house to be messy and enjoy my movie!
I also make sure I watch it at a time other then when I'm too exhausted to see it through to the end. I still sometimes fall asleep half way through, but I will then watch the end before I do anything else.

I think the most important point of all was to have a sense of humour! If you can't laugh at the absurdity of your situation, it will be a very dark place to be. Lighten it up with your laughter!

Anonymous Fri, Jan 10th 2014 @ 11:41pm

Hi Julia - just picked up this and "Peter's blog" message - such brilliant news! Yes I have survived - I was sensible and spent much of yesterday(my day off) in bed. Next week should be easier ... Thanks for letting me know. Frankie

Anonymous Mon, Jan 13th 2014 @ 1:14pm

Thanks so much for these posts. I think that they are very brave. The sense of loss when not working is very difficult to deal with. Well done, and all of the best for the future, as I hope that it will be bright.

David Jarvis Mon, Jan 13th 2014 @ 9:09pm

Really helpful and written with such an insight and understanding for what it can be like. Thanks Suzy :-)

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