I suffer from Dystonia. I've been told it's not a disability. Is anyone else in the same position?

donna_louise71

Hi my name is Donna I’m new to the group. I suffer from Dystonia an incurable chronic illness, I’ve been told it’s not a disability, anybody out there suffering the same as myself and could give any advice 
many thanks 

Tori_Scope

Hi @donna_louise71 Do you mind me asking who's told you that Dystonia isn't a disability? 

chiarieds

Hi @donna_louise71 - I'm rather surprised that you've been told dystonia isn't a disability as well, for as you say it's an incurable disorder. I believe you've previously mentioned it's cervical dystonia you suffer from, & it certainly appears you find this disabling.

We have had previous members with dystonia, but I'm unsure if they're still active on the community, unfortunately. Have you looked at Dystonia UK for some peer support? Please see: https://www.dystonia.org.uk/

Having said that, many of us here suffer from varying neurological problems, myself included, so you'll find an awful lot of understanding from our members. Please chat here any time, & join in with any discussions of interest. Please also let us know if you have any questions.

Ookpik

Who told you this is, it's not a disability. l suffered from this disability for 50 years. And, as the years went by, my dystonia just got a whole lot worse.  Mine is genetic. a certain gene l inherited on my Dads side. 
l have cervical dystonia, and it is segmental on the left side of my body. lt affects me greatly in life, and cannot do things l would love to do, which many people can do with ease. l find going out is a challenge, and can lose my balance easily. Some people thought l was drunk. But l don't drink.l have constant pain and terrible dull pains in my head every day, this disorder also stops me from sleeping, because of the involuntary movements of the muscles .l just cannot control the movements of my muscles. Not only is it a disability, but there is also a stigma attached to this. Boy, l can you a lot of what l had to put up with in life over the past 50 years. And to me, that is no doubt a severe disability. l get angry towards those who pass judgement on something they know little about. But, when you tell them. They say  negative things, which does not help
Of course, there are many types of dystonias, some are more severe than others. But to say, it is not a disability, is like saying PTSD is a mild form of a headache.[l am just taking this as an example] no offence to those who do suffer from this PTSD. 

janer1967

Hi and welcome to the community 

A disability as defined by the equality act is 

Any physical or mental impairment that affects your day to day life and is likely to last 12 months or more 

There is no such thing anymore of a list of conditions that mean you are deemed disabled as everybody is affected different by their conditions 

Digull

Hi,I have cervical Dystonia,I've had it over 20 years,I have Botox about every 3/4 months which takes the no no tremor away but not all my symptoms,I take 0.5 of Clonazepam when needed before bed,are you in any medication for it?

Ookpik

Hi,

l find this rather odd for a diagnosis of dystonia being classed as "Not A Disorder" whereas mine has been classed as a disorder. l have gone through the proper procedures of qualifying for DBS[Deep Brain Stimulation] and now l have the implant,l still have another year of being monitored by the NHS personnel on how to get the right adjustments for me to do things daily where others without dystonia view it as a normal daily way of life. And if that is not a Disorder, then l think that should be questioned. There are many different types of, Dystonia, Mine is Cervical Dystonia. Now,l am back from a long absence from this lovely forum of friends. l will one day type away my whole experience what l went through