Reform PIP; invisible illnesses sufferers are NOT being treated fairly

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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. and fibromyalgia. I developed it 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. They said that I am fine and can work with one hand. I suffer from depression and am on the maximum dose allowed.  I suffer from three invisible illnesses; but because they are invisible everyone assumes that I am fine. I am in pain every second of the day. I can only sleep with the help of tablets. I have been told there is no pain killer in the UK that is strong enough for me.

I am aware that as of 13th December 2017, the government have said they will reform PIP and ESA; and will get rid of the mandatory reconsideration. However I do not know how this will affect; or how it will benefit people like myself. I want to ensure that people like you & me will be taken into consideration when the changes are being made.

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 am on more medication than my grandad who is 84!

I have wrote a three page letter which I will attach on here for everyone to read. It is addressed to Theresa May regarding my story and what proposals I have come up with.

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.

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 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.

Thank you for taking the time to read this

- Amanda





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