Retirement and me

I am a huge believer in sharing our stories and in doing so helping other people to see that they are not alone, that there are ways through difficult times…

So with that in mind, here is the story of me and my ill health retirement.  Or at least the story to this point in time.

I have a condition called Ehlers Danlos Syndrome.  In a nutshell, this means that I am hypermobile, which causes joint and muscle pain, full and partial dislocation of joints and exhaustion.  It’s a genetic condition so it’s been with me all my life but I was probably about 21 or 22 when it started to interfere with my life.

My hands have always experienced the most amount of pain and this obviously isn’t very helpful if you have a desk job.  I had a fantastic manager who ensured I got the support I needed to continue with my job.  Initially, this was an access to work assessment which resulted in a number of recommendations for ergonomic equipment, a special chair and special pens.  This really reduced the amount of pain that I experienced at work.

As time went by, my pain increased and I think I had five different access to work assessments to ensure that I was getting all the support I could to stay in work.  It was a job and a team that I really loved and I didn’t want that taken from me.  Eventually, things got too much for me and through tears I had to tell my manager that I could no longer work full time.

I reduced my hours to four days a week which helped, initially.  Over time that too became exhausting and I reduced my hours again to three days a week.  The next step was working one of those three days at home.  And then that became too much.

It took a lot to admit to myself that I could no longer work.  I think it might have been one of the hardest things I’ve ever done.  The next thing I had to do was tell other people.  After much deliberation and procrastination, I emailed my manager.  It was too hard, at that stage, to tell him face to face.

I’ve always worked.  My dad is a farmer and I can’t remember how young I was when I started to help out.  I started work in a newsagent’s the weekend after my 16th birthday.  I worked full time the summer before and during my time at university.  After graduating, I had about a month of unemployment, followed by temping for seven months, covering sick leave for five months and then starting work for what would turn out to be my final employer.

I worked for my final employer to six years in numerous different jobs but with the same supportive manager.  By the time I retired I was managing the team.  I owe a lot to my team and my manager.  They all went well above and beyond to support me to continue to work.  Without them I would have had to have retired much earlier but because of them the decision to retire was so much harder.

Interestingly, whilst a google search for coping with ill health retirement provides limited information about the emotional side, a search for forced retirement is slightly more fruitful.  I was adamant that I would not be forced into retirement.  This was a decision that I wanted to make for myself rather than have somebody else thrust it upon me.

I imagine the emotional turmoil from a forced retirement would be very different to one you choose.  Although I say choose, it was a choice made with very tight constraints around it.  I am aware that if I hadn’t chosen retirement at some stage it would have been forced upon me.

Returning to my story, having told my manager, I then had to approach HR about my options and the process.  I had a lovely conversation with one of the advisers who set out the different ways this could go and answered the questions I had.  Luckily I was in the pension scheme which turns out to have been one of the best decisions in my life.  I was quite worried because I had only been in the scheme for two years, having had not been able to afford the loss of income previously.  She reassured me that this didn’t matter, we would apply for ill health retirement, I would be assessed and depending on my level of ill I would find myself in one of four scenarios:

  1. I would be assessed as fit to work
  2. I would be assessed as unfit to work but likely to return to work within three years
  3. I will be assessed as unfit to work, unlikely to return within three years but likely to return after that
  4. I would be assessed as unfit to work and unlikely to ever return

Depending on how I was assessed would obviously change the outcome financially.  If I was assessed as permanently unable to work, I would get a pension which will be worked out as if I had worked till retirement age.  Obviously this was the desirable, and as far as we were concerned the most appropriate, outcome.

Several months later and I had finally received the outcome.  In my case I had been assessed as unfit to work permanently and my pension was based on my full time earnings (because I had had to reduce my hours because of ill-health).

In so many ways I’m lucky – I’ve got financial security (although a lot of my pension now goes on care), I can choose what I do with my time, I don’t have to worry about restructures and I have lots of interests.  I knew I wouldn’t be short of things to do however, the reality is, when you have perhaps forty years ahead of you with nothing in them, you can get overwhelmed.

I officially retired at the end of May and at the same time, my door openers were finally fitted to my flat, meaning I could leave by myself!  Unfortunately, a lot of things were tying up for the summer at that point… Adult learning courses, groups etc were all taking a break…

So, now it’s September and things are starting up again and I am hopefully constructing myself a routine.  I have hydrotherapy starting, I have signed up for a weekly art course and am looking at other groups and courses.  I am hoping by the end of the year I’ll have a good idea about how much I can do in a week and have some kind of balance in my life.


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