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Reform PIP; invisible illnesses sufferers are NOT being treated fairly

This petition had 12,672 supporters

(I have been taken off Job Seekers Allowance as even they agree I am too ill to work. This is the only benefit I HAVE EVER BEEN ALLOWED and I've been taken off after 3 months).

Many people in the UK suffer from invisible illnesses such as fibromyalgia, complex regional pain syndrome (CRPS/RSD), depression, rheumatoid arthritis, chronic fatigue syndrome, borderline personality disorder; autism; just to name a few!

The PIP system is failing so many people and rejecting them due to a lack of knowledge and experience. The forms are not written out with mental health or other invisible illnesses (with varying conditions) in mind. It is hard to explain a typical day as it varies constantly.

I myself have been diagnosed with CRPS, fibromyalgia, chronic fatigue syndrome, Vitamin D deficiency, depression. I developed CRPS at the age of 23 and have to live with it for the rest of my life now. There are no medications out there to get rid of my pain. I am in pain every single day down the whole right side of my body. I developed repetitive strain injury at the age of 22 and because it was not treated correctly; I now have a condition that is incurable. I was doing an apprenticeship at the time of injury and wanted a career within an office. I have been told my career is over now and I need to look at alternative jobs.

I have been declined from PIP for two years in a row. I am currently in the process of trying for the third year. I have been told I am not fit for work right now by a private neurologist AND an NHS neurologist.

I am 25 and my life is that of an elderly person. I struggle to walk around shopping centres. My right arm and leg will give way sometimes and I cannot use them. I struggle to cook dinners and clean the house. Doing these tasks hurt me so much I have to spend the next day laying on the couch recovering. I do not go out far and never alone as I am scared my right leg will collapse.

I believe the PIP system needs to invest more understanding and consideration when assessing someone with an invisible illness. Just giving people disability allowance isn't going to fix problems. Providing them with understanding psychologists and easier access to treatments such as physical therapy will help many. Allowing people to be able to pay for their own medication and not relying on their partner or family will make them feel a little more independence than what they currently feel at the moment. To be denied PIP is like you are being denied the chance to be independent. A lot of us feel like a burden to those who help look after us. A lot of is became ill all of a sudden; one day we can be working doing an 8 hour shift; then the next day we get hit with an illness that just destroys your soul gradually and gradually leaves you housebound most of the time.

I have seen in the news that people have committed suicide after their disability allowance has been revoked. I have seen that people suffering with CRPS, chronic fatigue syndrome have committed suicide due to not receiving the correct treatment and not being able to cope mentally anymore.

Please read my letter to Theresa May for more insight into myself as a living example of someone the government has failed.

I am not ready to give up hope. I am not asking to be on benefits forever. I would love to get the support I need for a while to get back on my feet and to hopefully be fit enough to be able to cope with a part time job. I would like others; no matter what their illness is; to get the help that they need. We are all humans and we all feel pain. I am sure many other sufferers can agree when I say I would do anything to be healthy and get back into a full time job.

My GP's have said I am classed as having a disability. They have admitted they are unsure on what to do with me. They have said there are so many people in my situation and that they cannot do anything about it as it is down to the government.


CRPS affects my nervous and vascular system. The PIP assessor isn't going to know or understand how this affects me, so why should their opinion or verdict be chosen over a fully qualified neurologists?

Thank you for taking the time to read this

- Amanda





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