Chronic illness, chronic pain and working. It’s not what people think.

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Do you ever get accused of faking or exaggerating your illness to get out of working?  Yeah, me too.  Or I used to. A lot.

The thing is, I used to enjoy my job. It wasn’t brain surgery and I wasn’t saving lives…but it was good work and when I was employed (rather than freelancing) it paid well.  It was satisfying enough and I was good enough at it.

One of the hardest things for me was accepting that I’m not capable of holding down a ‘real’ job.  I can work,  I’m a web designer. I can work off site and I have a skill set that is perfect for telecommuting.  But I can’t tell you which days I can work, or how many hours and I can’t promise I’ll meet the deadline, because my health and upright hours are unpredictable, and usually few.

So I’m not that appealing to employers.  I get that.

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But today I was feeling pretty good. So I worked on a website for a small Nepalese charity I have been working with.  They are building schools and bringing WIFI access to tiny communities in rural Nepal  I am building them a website.  In days gone by I would have knocked it up in a day or two.  It has taken about six weeks at this point.  (this is the problem).  But a little third world charity is very grateful for my skills.  I’m sure they would have liked their website quicker, but they don’t complain. Because they earn about $300 a year.  And to buy a website like the one I’m building would cost ten about times that.

So it’s good for them. And it’s good for me.  Because I get to work.  Slowly. At a pace I can manage.  And I get to feel good about myself.  I get to do something constructive, for someone else.  People who have so much less than me.  And they trust me to just do the work.  And my opinion matters again.  And they are looking to me as the ‘expert’.

It feels good.

I’m nearly done.  If I’m feeling good tomorrow, I’ll finish it tomorrow. All those last little details always take longer than you think.

It just struck me…the irony.  People are soooo sure you don’t want to work. That you’re faking. When in fact losing your career, or working life, is one of the hardest parts of a disabling illness.  The day you have to accept you can’t perform at a professional level any more is a very hard day.  And people accusing you of being a malingerer only makes it hurt more.

If they only knew…the first day I feel quite good, what do I do?  I work.  Not a full day. Not even close.  Not for money, for satisfaction.  And I’m nearly done.  So now I’ll look for my next little third world charity, who might need a website, or copy writing, or social media advice. And who aren’t too fussy about a deadline.

Because I can still be useful to someone.

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4 COMMENTS

  1. I have had the same issues, now I get to work from home luckily enough at my own pace and not having to worry about the day to day work hours so when I feel good I can work and the days I don’t I know I have a project due date and can plan it out. Been reading How I Achieved Freedom From Arthritis by Eugene Sims, freedomfromarthritis.com is his site. His methods have helped me dramatically in the day to day. This is a phenomenal resource, might help anyone struggling with any arthritis issues.

  2. Not working is one of the worst things that has ever happened to me. I hate not working and I hate more being told I am lucky because of it. As I told an acquaintance once, I did not work for an education to sit at home. I worked so I could work and I like doing just that.

    • Exactly right Rick. Also I used to earn in a day what I now get in a fortnight in disability benefits. Why would I prefer poverty and financial struggle when I had a job I enjoyed? We all have our days when we’d rather stay home on the couch. But when every day is staying home on the couch, its not the great life that people seem to think.

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