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The financial and psychological challenges of living with a rare condition

Last week, we launched a report looking at the financial and psychosocial costs of living with a rare disease. This week we have a blog written by one of the participants in the research, Polly, who has Mal de Debarquement Syndrome (MdDs).

Set a budget

The financial impact of living with Mal de Debarquement Syndrome, (MdDS) has been well documented and is considered to be twice that of migraine.  Simply getting a diagnosis can be an expensive process.  So it was no surprise to me that, when a long-standing member of the MdDS community wrote a ‘Tips for Newbies’ guide, her Top Tip was the sage advice to set a budget and stick to it.  People with MdDS are often willing to ‘try anything’ to alleviate symptoms so we can resume normal life, including being able to work.  Out of desperation we may be tempted to throw money at treatments in a trial-and-error process that can rapidly drain our bank accounts.  Even if we resisted, travelling to take part in the funded trials was too pricey for many of us.  And, now that a trialled treatment is available in the UK, lots of us can’t afford it.

Campaigning organisations such as Rare Disease UK recognise that research into the costs of living with a rare condition is crucial.  Their understanding that this research needs to go beyond a basic financial assessment is welcomed by patients.

Hidden Costs

Recently I took part in a study by Genetic Alliance UK about examining the hidden costs of co-existing with a rare medical condition.  The study was admirable because it included psychological costs along with the more easily quantifiable financial losses and outgoings.  Because I now get financial support from my family I have the (albeit ironic) luxury of finding the psychological impact more relevant in the long term.  But the two aspects are intrinsically interlinked; money from my family keeps me afloat.  But it is psychologically challenging for me to live with the fact that, at a time when I planned to be supporting my elderly parents (pragmatically and financially), they are having to support me.

Damage limitation

In an attempt to reduce the burden on them, I turned to the state for support.  In 2010 (when I was still in the episodic phase of MdDS) I received Disability Living Allowance and was treated with dignity and respect throughout my claim.  But when I went into remission I ‘signed off’.  However, a few years later, when I was deemed to be in the chronic phase (i.e. with little or no chance of further remission) I put in a claim for Personal Independence Payment.  After a lengthy process that must have cost the public purse a sizable fortune – and which was described by someone with MdDS as being ‘administratively inept, brutal, humiliating and bad for my health’ – my claim was denied.  This experience is not exclusive to people with rare conditions, of course, although there is an understanding that without ‘evidence’ such as a care plan, prescription list, and/or reports from specialists, claims are often denied.  Since accessing this type of ‘evidence’ can be difficult for people with rare conditions, the odds seem stacked against us.

‘Paying the price’

For me, the psychological and financial effect of being told that I no longer qualify for state support was and is damaging.

Another reversal of fortune that harmed me came when I was referred to the ‘sleep clinic’ and was left with a ‘functional’ label for MdDS.  Apparently ‘functional’ (in certain medical circles) means ‘medically unexplained’.  This is not a synonym you’ll find in Word.  And the subtext inferences – hidden in euphemistic and woolly jargon – don’t necessarily bode well for patients.  Unless they enjoy being considered ‘merely mad’ rather than ‘really ill’.

I was advised that these labels could be ‘very dangerous’ and lead to ‘the certainty’ of prejudice in primary care.  It wasn’t easy to wrangle getting my original diagnosis re-confirmed and doing so was expensive, both for me and the NHS.  During the re-diagnosis consultation the neuro-otologist discussed a squint operation I’d had as a child, one of the factors that could have predisposed me to developing MdDS.  She said “You’re paying the price for that, now.”

The price – along with the end of my career and the deterioration of my independence – includes a loss of trust in doctors and the labels they can use.

But it could have been worse.  While some take comfort from a ‘functional’/‘medically unexplained’ diagnosis, it is disastrous for others. 

My heart goes out to all the families of patients whose diagnoses came too late.  The price they paid must not be hidden.

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