As someone who was recently diagnosed with – but has been suffering from – Fibromyalgia, I am of course an advocate for giving those dealing with chronic pain the support they need.
I was sent some information on the National Pain Strategy, which aims to promote knowledge and understanding of chronic pain illnesses, and ensure that patients receive high-quality care. I may be based in the UK, but chronic pain is a worldwide issue, and so I’m adding my voice to the #ISpeakForPain campaign.
The NHS is crippled. Since starting the process of getting a diagnosis, I was faced with GPs who fobbed me off with strong painkillers, a rheumatologist who didn’t seem to understand the full test for fibromyalgia, and other “specialists” who didn’t seem to be informed or interested at all. I was warned at least 7 times about Amitriptyline, about how it can make you feel drowsy, but was prescribed Naproxen in the blink of an eye. I received my formal diagnosis at the end of May, and yet here we are, two months later, without any physiotherapy or other treatment lined up. I’ve just been given medication to try, and it’s down to me to fight for what I need. But, thanks to the fibromyalgia, sometimes I’m too damn tired to fight.
The way patients in general are treated is usually unacceptable, but those suffering from chronic pain seem to be treated even worse. Accused of being “druggies”, of making it up, left for months or even years with little to no treatment. And the British government is even worse. I applied for Personal Independence Payment (and, miraculously, was successful), the disability benefit in the UK, but after receiving the report that was made after my face-to-face consultation, it’s clear the woman lied several times. She said that some of my “claims” (finding it difficult to read when having a particularly bad time with exhaustion) is “inconsistent” with my reviewing books for a hobby. The thing is, fibromyalgia, and other chronic illnesses, ARE inconsistent. One day you can be so exhausted you can barely form words; the next you may have bursts of energy, the next you can just about function. It’s up and down, not black and white. And so many people in positions of power – health, government, education – are seemingly unaware of this fact.
This is our life. We live with constant tiredness, pain, aches. We have to alter our diets and exercise in certain ways. We have to battle with our doctors to receive the treatment we desperately need. We get used to working or raising our children with half the energy someone without a chronic illness has. We get used to rationing our energy (or our spoons) so we can do basic, everyday things, like washing our hair, or food shopping, or cleaning the bathroom, or taking the kids to the park. And forget socialising! There’s no way I can meet a friend for coffee after a full day of work. We have to explain to everyone why we can’t do things, or why we live the way we do, always having to rest and recover, not push ourselves. We have to budget, even in the UK, to ensure we can afford our prescriptions, or even pay for things like physio out of our own pocket, because we’re sick of waiting for the NHS. The healthcare system in the US seems to be particularly hard on the wallet, and this is unacceptable.
We should not be discriminated against for having an illness that will affect us for the rest of our lives. We’re suffering enough already. And so I speak for pain.
About The Petition
The NFMCPA, with Consumer Pain Advocacy Task Force (CPATF), recently launched a White House Petition
in support of a better future for people with debilitating, life-altering chronic pain.
We need your help to make treatment of life-altering, chronic pain a national priority. Please join us to urge patients and supporters to sign the White House Petition calling to implement and fund the National Pain Strategy (NPS). If the petition fails to meet the 100,000 signature threshold by August 12th, it will not receive a response. Patients and families can’t afford silence from the Administration any longer on why there’s been no movement to fully enact the NPS.
The National Pain Strategy is a first-of-its-kind blueprint for improving chronic pain care in America, that increases research of pain treatments, medical training for clinicians, and awareness of chronic pain as a disease of epidemic proportions. Without an outcry from patients and advocates, NPS may not be implemented or funded at all. The chronic pain epidemic must be addressed immediately by fully implementing and funding the NPS.
To support this campaign, sign the petition, visit the links below, and share on social media.
Petition | Facebook | Consumer Pain Advocacy