HSD & hEDS advice required — Scope | Disability forum
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HSD & hEDS advice required

Rob_HSD_hEDS Community member Posts: 3 Listener
edited July 2019 in Autism and neurodiversity

I wondered if anyone can give any advice finding suitable employment with the HSD & hEDS conditions?

In Jan 2019 I was diagnosed with HSD. I also have 2 faulty collagen genes causing some mechanical rigidity to my tendons and ligaments, with frequently occuring tendinopathies, ligament and joint injuries.  

I am trying to ascribe to myself what my degree of disability I have?  How does one achieve a rating?  Who gives it?  I am quite able, but only some of the time. Sometimes you would not notice anything is the matter.  But at other times, I will be stuck at home, bedridden/ virtually unable to move, in acute 8/9/10 pain due to sub luxed hip/ unstable SI joint/ displaced sacrum. This seems to now take around 8 - 10 weeks to resolve itself, and may happens once or twice a year (if I am unlucky). But usually, 2 -3 times a month I sublux or pop something. Sometimes I recover quickly after a bit of ice/rest/ ibuprofen, other times might require a trip to the physiotherapist to help with a reset of say my shoulder. Last year I had about 3-4 months injury free/ and low pain which was bliss. I was even able to complete some decent DIY work around the house then (very slowly and gingerly, with lots of breaks, but I got a lot done).  Since realising my likely diagnosis (about 6 months before my actual diagnosis was confirmed) I have managed to make some improvements.  This was due to previous NHS advice being contra-indicatory to my condition and causing harm, but in overall terms I am not able to get better, only manage symptoms better.

It is unfortunately the case that it has taken 10 years from my first significant injury to final diagnosis (which is just the beginning of my journey). Although I had ankle ligament replacement surgery 25 years ago, it was not connected to my condition. In these last 10 years, I've been on the receiving end of some pretty shoddy treatment from the NHS. I don't want to get into the detail, as it is a vast amount of ground to cover.  However in this time my physical condition deteriorated rapidly, particularly from 2014 to Sep 2016 when I was frequently ill/ bedridden/ due to a constantly displaced sacrum/ siciatica/ nerve sign. All the way up until early 2017 I was hobbling around on a cane when I could walk.  My dispute/ issues with the NHS are ongoing and are unlikely to be resolved anytime soon. At present they will not admit to any clinical error/ are pushing back terribly, and so at the moment assistance & suppport from them and my GP is very limited. In the mean time life goes on ........

I am advised by a PIP charity to keep a diary, which I started this year. I was physically knocked out Feb - May, so not a good start, but with knowledge of the correct diagnosis/ clincial context for the first time, and help from a suitably HSD/hEDS skilled (private) physiotherapist, I was able to significantly shorten my recovery time.

I am 53 years old, and although I was still able complete some temporary part time work up until Jan/Feb 2014 (when the last employer asked me to leave my assignment after 1 week due to my obvious physical condition/ and distress), I have not worked formally for the past 10 years, and now with this illness I am hoping to make a recovery/ return to work on some basis. 

I do not qualify for any DWP/ income support benefit due to my wife's wages being to high.  However I will add that, in the year before my injury 10 years ago, my wife was also very ill.  Fortunately she has been able to make a magnificent recovery, but during the time we were both ill, we still owned several properties, and of course for that reason of property ownership we were not entitled to any DWP/ income support.  My knowledge of the DWP/ PIP, etc, is very low - prior to illness I had always maintained 100% employment. We do not have sufficient income together, and I do need to work now that I think I can.  We've been in steady decline for 10 years.

I also think I have high functioning Aspergers, although I succesfully rocked in my accounting/ systems tech type job for the two decades before illness. It was never a factor.  I will ask a separate question on this later. 

If you've read this far, congratulations, and thanks :)


  • Adrian_Scope
    Adrian_Scope Testing team Posts: 10,599 Scope online community team
    Hi @Rob_HSD_hEDS. Welcome to the community and thanks for posting. In terms of gaining suitable employment, have you thought about trying one of our employment support services?
    Alternatively, you might make use of Evenbreak or Disability Jobsite.
    Community Manager
  • Rob_HSD_hEDS
    Rob_HSD_hEDS Community member Posts: 3 Listener
    Thanks Adrian. Yes I have had a look, not much going for my location (Grantham, Lincolnshire).  I have applied for a few local jobs in the last year, but only had two interviews. Both bookkeeping roles, one at the local council, the other at a small retailer of blinds. Both times unsuccessful. I never heard back from the council. The retailer thanked me for coming to the interview and wished me luck in the future. That was it. Both jobs were very junior and low paid compared to what I had done before. As most people have not heard of my condition, I just explain it as having had a serious back problem for 3/4 years, having been misdiagnosed by the NHS/ and hence incorrectly treated, but I am much better now. Difficult to hide a 10 year work/ career gap though.  My former self would not hire me in those roles, as the risk of sudden absence and illness would just be too high. I was hoping to speak to others with HSD/hEDS or EDS, and to see how they manage things.
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @Rob_HSD_hEDS, thank you for sharing this with us and I am sorry you have been pushed back from the interviews. How are you getting on at the moment?

  • Rob_HSD_hEDS
    Rob_HSD_hEDS Community member Posts: 3 Listener
    Thanks Chloe, I only applied for two jobs in a 12 month period.  I was invited to another interview in March, but just at that point my hip/ sub-luxed (as it often does), but this time it also causing my SI-joint and sacrum to become unstable and I could not walk or do much for at least 8 weeks .... this is what constantly happens.  Have you ever encountered on this site/ assisted anyone looking for work with with HSD/hEDS/EDS ? I think I mentioned, I'm 53 years old, I've not worked at all for the past 4 years, and for the previous 6 years before that I was only able to work a few months at a time sporadically before falling ill (usually quite dramatically), etc. I have not collected a brass bean of benefit in all this time (as my wife earns above the threshhold amount) but this is no consolation, wheve taken a big financial hit as a result of me being "ill".  I look fine on the outside so some people close to me don't understand why I am not working, they say I should be collecting either PIP, jobseekers, UC, else I need to work, they don't understand how easily it is for people to fall betweeen the chairs and that the DWP are quite unhelpful (generally don't give a toss), I have to say I find it all very hard .... It does not feel like there is much hope.
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Morning @Rob_HSD_hEDS! I can imagine the unpredictable nature can be stressful. Did you look at Scope's employment services that Adrian suggested? We may be able to help you in that way :)

    In terms of benefits. Personal Independence Payment (PIP) is not a means-tested benefit and is not affected by earnings, other income or savings. it is possible for someone to work full time and be awarded PIP as it goes on how you are affected daily. Is this something you would be interested in?

    Here is more information about PIP :)


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