How to talk to a politician

Introduction

I am talking to you on behalf of myself, the many others living with Fibromyalgia and the Fibromyalgia Association Canada (FAC)

Facts about fibromyalgia:

Are you aware that more than 1.5 million Canadians (2-4% of our population) have been formally diagnosed with Fibromyalgia?

Let me share with you some brief facts about fibromyalgia:

  1. Fibromyalgia is characterized as a complex, chronic invisible illness with multisystemic conditions involving many symptoms, the most common of which are widespread chronic pain, fatigue, sleep disorders and cognitive impairment.
  2. This debilitating syndrome is still not well understood by many healthcare professionals, in part, due to a lack of funding and research.
  3. Many patients’ health concerns are disregarded and disbelieved. As a result, many people wait years before receiving a formal diagnosis, while their quality of life and ability to function daily deteriorates.
  4. Currently there is no cure for fibromyalgia; very little qualitative or quantitative medical research on fibromyalgia has been conducted in Canada to try to identify biomarkers or the root causes.
  5. This life-altering condition can also negatively impact our relationships. Those closest to us often grow skeptical of a disease which is often misunderstood and invisible. Due to a lack of resources, support and understanding, it only compounds this frequently, unacknowledged condition.
  6. Fibromyalgia can leave people impoverished as well as debilitated and unable to work. Loss of income leads to impoverishment which affects living conditions, food security, mental health and adds further strain on the family unit and/or caregivers.
  7. Other people experience fibromyalgia symptoms constantly, and find that it affects their daily life more severely. Some people may have mobility problems due to dizziness or balance issues, or find chores and personal care exhausting.

Your Personal Story:

My name is _________________________.

I was diagnosed in __________________.

This is how fibromyalgia affects my everyday life. _____________________

If you are a member of or want to promote the Fibromyalgia Association Canada a summary of what FAC is:

Fibromyalgia Association of Canada [FAC] is a non-partisan, bilingual, national organization representing people with fibromyalgia. Fibromyalgia Association Canada is a federally incorporated, not-for-profit, volunteer-managed organization committed to making fibromyalgia visible to all Canadians.

Fibromyalgia Association Canada’s mission is to bring together persons with fibromyalgia living in Canada, to raise our voices and fight for our rights through four areas of focus: Advocacy, Awareness, Education, and Research.

What we need from the Politician:

Income is one of the most important social determinants of health. The fibromyalgia community has many impoverished members. Fibromyalgia is a condition that can be difficult to prove, and workers’ compensation and personal injury cases can become “expert versus expert,” with no one winning. This lack of belief in the illness can affect people financially. This can leave people impoverished as well as debilitated. Impoverishment can affect living conditions, food security and cause lasting psychological effects.

We need you to help us address this issue by advocating for better disability income for people with fibromyalgia.

We need you to help us advocate for better health care benefits for people on disability.

We need you to help us advocate and educate to ensure there is a better understanding of what fibromyalgia is so that our community does not have to fight for workers compensation, disability benefits, LTD and other social assistance benefits.

We need you to fight for a living wage so people with fibromyalgia who are receiving the above disability funds do not have to live well below the poverty line. Many people with fibromyalgia on provincial social assistance can only afford to eat once a day (or in some cases, not at all) and are often forced to choose between paying for food or paying for medications. Many drugs and services are not covered under provincial disability programs, forcing people to make dangerous decisions about their health.

We need you to help advocate for better low income housing so that people in our community do not have to live in unhealthy living conditions.

We need you to advocate for medical treatments for fibromyalgia to be insurable.

We need you to advocate for clearer guidelines declaring fibromyalgia a disability so that employers know that it is unlawful for an employer to treat a fibromyalgia job applicant, or employee, less favourably, simply because of their disability. This type of discrimination is known as direct discrimination. It is unlawful and cannot be justified.

We need barriers to be removed from benefits such as the Disability Tax Credit – living with a disability is challenging enough, without the added stress of completing such complicated documents. Stop making us fight so hard.

How to end your conversation:

Stress to the Politician that if 2 to 4 % of the voting population have fibromyalgia, and that number may be higher, that is 2 to 4 % of their constituents and if the race is tight that number can determine who gets elected.

End the conversation by thanking them for their time and that you hope you can count on them to help you fight for the people with this chronic, debilitating illness. Stress that you hope that they will help the Fibromyalgia Association Canada with any Advocacy work they undertake to help the people with fibromyalgia live better lives.