One rare condition – many common issues

What are the multiple challenges of having an invisible condition, and how can greater awareness help? To mark the beginning of MdDS awareness month, our friend Polly Moyer has some useful insights to share.

June is the awareness raising month for the rare condition I’ve got.  As most people reading this will know, raising awareness about individual rare conditions is challenging.  Should we focus on educating doctors about them, or try to raise awareness in the general public?  Should we attempt to fundraise by running a marathon or climbing a mountain, in the hopes of attracting press coverage at the same time?

Raising awareness about Mal de Debarquement Syndrome (MdDS) presents some additional challenges.  Put bluntly, it doesn’t kill us and doesn’t affect children – so it could be seen as a low priority.  Yet if we look at MdDS as just one example of a balance condition it becomes clear that raising awareness is crucial, simply because these conditions are still frequently misdiagnosed and misunderstood.  The same applies to many other conditions which involve some form of malfunction in sensory processing.  These conditions are often completely invisible which can also hinder understanding, compassion and access to relevant support.

One doctor I met put it all very eloquently.  “MdDS and similar conditions are cruel and show no mercy.  They don’t kill you – instead they steal your lives and sometimes only a few of the people you need most will notice.  If you could wave a visible sign of damage at me, your family, your co-workers and so on, you’d be sure to receive sympathy and support.  Without that you have to rely on a level of awareness which is often lacking.”  We went on to discuss the feeling of ‘friendly fire’ that occurs if doctors are dismissive, both of the symptoms and of the associated economic and social issues.  I pulled no punches and told him about the abuse I’ve witnessed when doctors also show no mercy.  This ranges from a patient being told ‘We see lots of bored, attention-seeking housewives – I think you’re one of them’ to people receiving inaccurate psychological or psychiatric diagnoses which are then impossible to eradicate from their medical records.

He, like me, was stunned to know that the main barriers to diagnosis for people with rare conditions is that doctors often don’t believe their patients and/or that symptoms are dismissed as being ‘psychological’.

Polly's MDDS Awareness blog pictures

The shocking response from a survey about what people want from rare disease communities.

 

So with all this going on it’s even harder to focus on one specific condition, when raising awareness.  Yet the MdDS story is a positive one and spreading good news within the health service is always fun.  Unlike many rare conditions there are treatments for MdDS and we have great specialists championing our cause.

But, while we wait for treatment to be available here – and save up for it – there are some general points about balance conditions I’d like to share for our families and friends.

  • Please read about cognitive/vestibular interactions. This will help you understand why we often can’t follow simple recipes and why we get our merds wuddled.
  • Telling us we look well may make us cry. It can indicate to us that you may have forgotten that our bodies are at risk from falling or lurching into walls etc.  We know you mean well but … appearances can be deceptive.
  • Symptoms fluctuations can lead to good days for some of us, thank heavens. But that doesn’t mean we’re fully recovered or safe from further bad days – we wish it did as much as you do.  Probably more.
  • Cancelling plans sucks. Please tell us it’s OK when we have to do this and please keep making plans with us.
  • Helping us with the laundry makes all the difference. And helping us to raise awareness, whether we have a rare condition or a common one, makes you a superhero.