Updated: Facebook group, goals and the future of Polymyowhat
(Note: Polymyowhat: Understanding Myositis is now Myositis Support and Understanding, a 501(c)3 nonprofit.)
Update: Polymyowhat.com and its future is now the future of MSU. The below was written prior to our name change and 501(c)(3) status.
As the Polymyowhat.com blog and Facebook group creator, I want to share a few things with you including what my goals are, where I hope we can go into the future and important key concepts I used in creating this.
First, Polymyowhat is no longer just a blog; it is also a Facebook group and a Facebook page. I started the Facebook group a few months after the blog with the main goal of reaching out to those living with myositis as well as to provide resource for myositis patients, caregivers, supporters and medical professionals to share their input, advise and expertise and as a way for us all to share our lives with one another. The Facebook group is a closed group meaning you must request to join. This prevents any post you make in the group from becoming public on your personal Facebook timeline. This is so we can all feel comfortable sharing our stories, histories, ups and downs without our friends and family reading them. We do allow some family members to join when permission is given by the member in the group. Sometimes it is important to remember that someone taking care of a loved one with myositis may be the patients only link to this information.
The Facebook group was very small for quite a number of months. When it started growing I began to see amazing things emerge. The group took on a life of its own! I don’t like to micromanage and have not had to worry about implementing such uselessness. The group has become a way for us, living with this rare disease, myositis, to communicate with other without geographical regard. Diseases that are more common, such as diabetes, have a ton of local options for resources and support that are close by. We do not have that option since many of us are spread around the country or even the world. By using Facebook Groups and our blog, we are able to share with each other the things we need to know like how our disease presented, what our doctors are telling us, medications we use, helpful tips on everyday living, and how we deal with certain circumstances. I consider this a successful beginning for myositis awareness and support. We are now talking about reaching out in other ways to help even more people realize that they are not alone in this. Stay tuned for updates on our planning and if you have ideas or would like to become involved, I would love to hear from you.
For even more information on myositis from my perspective, please refer to the informational post I wrote a couple of years ago: Myositis, an Informational Journey, located here.
What were the goals I had in mind when I created Polymyowhat?
– Provide educational updates regarding myositis and related diseases/treatments and to continually promote the importance of keeping up to date on recent breakthroughs, clinical trials and helping to educate more on what myositis is and what it is like to live it.
– Help fellow myositis patients to create a take-charge attitude in their lives and their health as I do and to never give up hope. Patience is an important part of taking charge of our health.
– To continually plan and develop new ways to reach out to the myositis community in order to raise awareness, promote positive attitudinal thinking and foster means for patients to find resources they need in a format and medium that is comfortable for them without fear of judgment, discrimination or negativity.
– To advise patients that nothing they read online should be taken as medical advice and to always talk to a doctor before taking any advice given by a fellow patient or something read online.
– To help others to “live to smile” regardless of circumstances.
Knowing the goals and reassessing them from time to time is an important part of the Polymyowhat creation process. It is good to keep up with current information that is out there because I have found that not all doctors do so.
It is imperative to take-charge of your health; something I was forced to do and fully live, support and promote. We must care enough to stand up for our health care needs and not let any doctor push us aside because they either do not know the answers or feel they do not have the time. Finally, we must continually redevelop these goals; as technology updates, so must we. We must always find the best ways that are comfortable and safe for us to share our lives, our ups and downs and our continual approach to dealing with our disease that will help us and hopefully many others.
What about the future of Polymyowhat?
As for the future of Polymyowhat, I am quite optimistic that the group members will start to add their voices to the blog as well as continuing to support, listen and encourage the others as more and more myositis patients find us and we find them. As we move forward, I hope to continue the simple yet meaningful message of the blog – to bring about awareness, hope, positive attitudes, education and an overall goal of helping others to “live to smile!”
Another goal that I had set when first starting all of this was a hope it would develop into a non-profit group that could provide financial assistance to those who are in need of medications they are unable to afford, provide education to patients and doctors or, at the very least, some form of Myositis organization that can support our needs. However, creating a non-profit is not as easy as it sounds. To do so properly and for it to run smoothly and with transparency, it takes money and a lawyer. For right now, this goal is on hold but not forgotten. If anyone is interested in helping me pursue this avenue, I would be happy to talk with you!
Finally, I want everyone to know that I am looking for co-authors for this blog. Your voices need to be heard and your stories will help others that have yet to be diagnosed. If you are interested, please contact me.
Thank you to all group members, my family, my friends and especially my partner Charlie of 10 years (at the time of this writing) for his continued support, love, and understanding.
Until the next time, remember to smile!
Update: As of 2014, “Polymyowhat: Understanding Myositis” no longer exists. Rather, it has become “Myositis Support and Understanding” with an active, working board of directors.
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