Multiple Sclerosis and Advocating for Better Times
What is advocating, you ask? One who advocates to bring change for a cause or policy, or pleads in favor of others. Basically to help make changes to benefit others and, in my cause, patients with MS, which I have as well.
There are several ways to advocate for those of us with disabilities or internal illnesses, and I’ll share my approach and journey.
Advocating to make a difference
My advocating began, without knowing it, long before MS and before I even knew what it was. I have always pushed to develop changes within processes, procedures, and approaches to improve, define, and make things easier. Little did I know that later in life this direction would make a difference in others’ lives and medical industry support.
A famous saying hits home with me - “You must be the change you want to see in the world” - and I wish to be effective. So how have I made a difference?
There are many ways to advocate
There are many ways we can advocate for change. One way I take part in, and you might consider, is simply completing a survey. This is where I began and am still active in doing so weekly. Surveys provide a wealth of information for companies to gather opinions from a variety of individuals.
The personal perspectives collected help to define needed changes, services to be offered, and process improvements. You can sign up through several organizations such as the National Multiple Sclerosis Society, Multiple Sclerosis Association of America, or other organizations you work with.
Another way you might consider that I find helpful is becoming a member of Facebook sites for those with MS, or participating in sites devoted to MS. This approach allows me the opportunity to share my thoughts on several topics and provide my perspective when asked by fellow MSers.
Speaking up for older folks with MS
One of my advocating opportunities began by advocating for myself. I know you’re thinking, “what?” Yep, I read an article about contributing to the advancement of medication and the need for an MS patient advisory board. My thought was, “wow, I need to participate," and as I read on an age limit was set.
Yep, I was several, OK, a few years above the age limit. The more I thought about it, I became more encouraged to advocate for us older folks. I wrote an email to the company explaining why they were missing out on what older patients could add. I received an email response stating I offered several good points, and they are reconsidering.
An invite to provide feedback
After a few more exchanges, answering several questions, and a phone interview, I received an email inviting my wife and I to join the patient/care board. Our first board meeting took place in Chicago, where we discussed what type of support and website tools were needed. Once deployed, we were requested to review the site, test, and ensure what we discussed was implemented.
The following year we met in Los Angeles to discuss the current services and website tools offered to patients and caregivers. The board offered a few additional ideas for improvement. It's another example of how advocating can branch out in many ways to improve needed services, support, and guidance.
Lending a helping hand to others
There are many ways you can choose to become an advocate to shape the future and lend a helping hand to others. I find advocating to be a personally gratifying process through making the future a little easier along the way.
Thank you again for taking the time to read the article, and I look forward to hearing your thoughts regarding advocacy. Until the next time, I encourage you to pass on an act of kindness and a smile.
Were you misdiagnosed with something else before receiving a MS diagnosis?