The Power of Using Your Voice

Author: Paula Jackson Jones
Orig Published:  12/7/2017


Something that I’ve noticed happens to chronically ill people is that they tend to over time lose their voice. Not literally but figuratively. As the duration of their illness goes on over time, they start to feel invisible and as they slowly lose hope of ever regaining their health back, they become quieter and quieter thus losing their voice.

Sometimes this is caused by those entrusted to care for them. Patients are acutely aware of how friends and family react to their ongoing health issues and tend to not discuss them. Or how they are treated at a medical appointment when they raise a concern and it is met with disbelief or distain. After a while, the patient stops complaining or even talking about their illness and isolation sets in.

As an advocate, I am constantly encouraging people to use their voice when they feel that their needs are not being met. I do not encourage anger and confrontation but empower them with knowledge and support to know when they are entitled to make a better decision for themselves or a loved one.  Medically speaking, many feel that they do not have any control or power over what happens to them, that they must accept what is given or told to them without any recourse. That cannot be further from the truth.

With knowledge, people recognize when they hear incorrect information or when a potentially harmful directive is offered. Knowing that you have the right to say NO, you have the right to say I WON’T ACCEPT THIS, you have the right to move on and find another provider ~ you are empowering yourself or your loved one.

Several weeks ago, the U.S. Department of Health and Human Services (HHS) announced the new HHS Tick-borne Disease Workgroup, comprised of 7 federal and 7 non-federal appointees, which was established through the passage of the 21^st Century Cures legislation. The purpose of this Working Group was to review all HHS efforts related to tick-borne disease to provide expertise and help ensure interagency coordination and minimize overlap, examine research priorities and identify unmet needs. Per this legislation, the group was to consist of medical providers, scientists or researchers with expertise in this field, patients and family members, advocates and federal experts working in related areas.

HHS Tick-borne Disease Working Group

Now why would I bring this up and what does this have to do with the power of using your voice?  One of those appointees was known to have had a longstanding history of blocking much needed resources to the Lyme community while profiting financially from these actions. As soon as the appointee list was made public, Lyme patients everywhere spoke up.  Individually, it was one voice raising one concern but collectively, a petition containing over 15,000 names along with genuine concerns raise got this appointee removed from the working group. You can’t task someone with something that they don’t believe even exists. One voice, one message strengthening one after another until change was made. By removing this appointee, the Lyme community felt heard, felt that their concerns were validated, that the correct action was taken, and the appropriate outcome achieved.

The longstanding controversy surrounding Lyme treatment and “chronic Lyme Disease” deserves a fair and impartial review, regarding all newly submitted evidence-based research, from all sides, This HHS Working Group is tasked with taking all the research and creating unified accountability.

When I came forward and shared my personal story publicly for the first time, I had no idea just how many lives where going to be touched. When I first started out on my journey seeking diagnosis and treatment, I had no idea the options and resources available to me.  I chose not to use my voice for anger but for awareness, education and support. I chose to empower others not to be angry but to be informed and connected to local resources so that they can make the best decisions possible. 

The power of using your voice, saying “I know better and I won’t settle for this” is becoming more and more visible but we still have a long way to go. Knowing that you have a choice, puts the power back into your hands. 

Knowing that there are medical providers who are following up-to-date evidence-based protocols, who are highly knowledgeable and who are heavily networked for your benefit, empowers you to know that you have options.  And when dealing with a disease where there is no one-size fits all approach to treatment, options are your lifeline only regaining health and wellness.

~ Paula

[Paula is the President of the MLDSE, the Maine-partner of the national Lyme Disease Association, a member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at paula@mldse.org]