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Am I rare or disbelieved?

MEMBER BLOG: Darren Brewer

I am 32 years and live near Brighton.

After years of suffering with my symptoms, being told I’m not 'sick enough' and that there is nothing really wrong with me, I was finally feeling a little more positive - but the positivity did not last long.

After a referral in January 2018, a Doctor said there was the possibility I had Ehlers-Danlos Syndromes (EDS) which is a connective tissues disorder.

The medical practitioner there repeatedly told me they had seen worse cases than mine. That made me feel insignificant.

Despite this, they did refer me to a large teaching hospital in London.

The hospital promptly wrote back informing me that I was not currently sick enough to be seen by them, and that they would not see me until I required ‘Further Medical Supervision’.

I was referred back for a follow up appointment which took place on Friday 16th November 2018.

At this appointment the Doctor examined me, ticking the necessary boxes, asking relevant questions etc and eventually reaching the diagnosis...

I was informed I would be seen again in 3-4 months in order to monitor my condition, but in the meantime I would be referred to Gastroenterology for further research into my weight loss/stomach issues - stomach cramps/pain, bladder issues, weight loss and lack of appetite.

I was later informed (after some confusion) that I was in fact not going to be referred to the London hospital after all, as the initial doctor did not feel it was worth ‘stirring up that ghost again’ after one hospital had already declined to see me.

I was also seen by Cardiology and respiratory departments for issues of breathlessness, dizziness and chest pains and possible Postural Tachycardia syndrome (PoTS) which can cause these problems.

It was recommended by Physiotherapy, Cardiology, Respiratory and Occupational Therapy that for both my physical as well as mental wellbeing, I did need to go to the London hospital after all.

A reluctant referral and delayed to August 2020 - I now have to wait until May 2021 to contact the doctor again to discuss referrals.

SussexEDS helped me find their online community, so I don’t feel quite so alone, I can reach out and people who understand.

I also saw Dr Eccles (SEDS Patron) in March 2020 in Sussex, who believed me, after applying to go on a study advertised by SEDS. Sadly, I was not able to do the study due to possible other conditions.

I think (and others have echoed my feelings of) that some doctors, like my initial one, would much prefer treating people with nice straight forward issues rather than something that requires patience, time & or effort .

I understand the NHS is over stretched and time is precious but at the same time I (we) didn’t ask to be born with a condition that nobody really knows anything about.

This is also the same Doctor who told me that there were no support groups etc in Sussex and that the nearest one to me was located on the Isle of Wight.

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