Social Media and Invisible Chronic Illnesses-The Importance of building a better support system

5-13-13

Social Media has been under scrutiny lately for giving too much exposure to all that is negative-bullying, bashing, hate, ignorance, obscenity and just plain rudeness. But it is not being given the real credit it deserves. There is a huge benefit to social media when it comes to the ICI community. Especially to those who cannot get out and connect to people as often as they’d like on a one to one basis or in group settings. Some people are so disabled by their chronic illness that they cannot get out and socialize at all and depend on their contact be in Face Book, Twitter, Google or IM (just to name a few). I really wish social media was this easily and readily available 25+ years ago when I started to struggle with Migraine Disease. What a comfort it would have brought and more knowledge in the illness by connecting with others.

 Images of Internet Browsers

And there is access to websites that specialize in these Chronic Illnesses where you can also interact via blogs, forums or email. There is a lot more information readily available for those learning to research on their condition, or for those who have been struggling for years with no end in sight that needs the comfort of interaction and support from others who suffer the same affliction.  I have also come across several sites that state how social interaction is vital to human health and this is just one of many to verify that concept: http://www.traumaregister.co.uk/Articles/Human_Health_Contact.htm

http://www.mayoclinic.com/health/support-groups/MH00002

http://www.worldusabilityday.org/social-networking-health-care-part-i-designing-trusted-peer-peer-support-groups-using-social-network

http://www.worldusabilityday.org/social-networking-health-care-part-ii-managing-trust-peer-peer-support-groups-social-networks

 

So no matter how you interact with people-if you can make it out to church gatherings or family gatherings, great. If not I strongly encourage you to join support groups online as it is so beneficial to interact with others and not stay cooped up in your home all alone.  And you don’t have to be computer savvy to interact with people online. You just need an internet connection, a basic computer or tablet and bookmark sites in your toolbar or favorites list. It’s really easy to set up a Face Book account as well and you can search for support groups based on your Disease and follow that group and interact on some of the ongoing conversations. Or start your own-don’t be bashful or scared of the network media. But when you can if at all possible it is still important to try to get out when you feel like you can tolerate it and interact with people in an individual setting or a group setting. Go to church, bible study, quilting group, sewing class, the library, if you live in a  town with well maintained sidewalks go for a walk on a clear day (wear your darkest sunglasses) and take a stroll and just say hello to people that walk by. With a smile on your face and a friendly hello can make someone else’s day and yours as well when you get a friendly response.

 Image of social gathering

Today’s cell phones are also a great form of Social Media, to text people for support-to let them know your struggling and need help at that moment if not just a kind word. These newer Smartphone’s are also an important role as you can have Internet access and you can keep in touch with your Media Contacts by having Face Book, Twitter, Google and even checking out some of the blogs you subscribe to. It doesn’t matter how you interact but just as long as you do so and on a regular basis. Even to just send a message to someone you know is struggling with a simple message of “thinking of you” or “sending hugs” means a lot to someone who is struggling. It means a lot to me when I receive messages of support.

 Images of Cell Phones

I have become a lot more involved in Social Media as of last fall when I was at my lowest point in the deep pit of despair and depression, and found comfort in blogging for the first time to express myself and to also find support groups via fellow bloggers and support groups on Face Book. Face Book has come a long way from being a tool for teenagers to interact, and sometimes bully and terrorize others. Sadly it’s also a place where adults too can be bullied and harassed. But for the most part I have found it to be beneficial. And to send and receive quick messages of support or updates via Twitter is a great boost when you’re having a low day.  And if you ever come into contact with someone that harasses you or tries to bully you on Face Book you can block them from your page and report them. So far I’ve not had an experience in the past few years so thankfully I can report I’ve not had to block anyone.

 Social Media Icons

I have become a member of 2 very important support groups via Face Book: CMA-Chronic Migraine Awareness and The Coolest Fibro Chicks around town for Support and Love. I felt honored to be invited to join their closed groups and have met many wonderful and inspiring people. In the Invisible Chronic Illness (ICI) community for years we have been neglected, ignored, trivialized, harassed, belittled, mistreated, misused, abused, traumatized, stigmatized, misunderstood, under medicated, overmedicated, not medicated correctly, misdiagnosed, under diagnosed, SSD denied, SSD appealed, SSD approved, legal issues, divorce, break-ups, family dissention-the list is endless and I could really bore you if I continued. But in an actual support group you can interact with others that have the same illness as you and not be subjected to any of that abuse. You are accepted and given love, support, kindness, consideration and most of all your given validation and a place to share without judgment. We are accepted for who we are and what we go through and we uplift each other and give each other hope. And in addition to that we learn more about our disease by hearing stories about how others have achieved goals and what they did or used so you can implement those into your plan of care.

 649512y4khod2fs

I have learned more this past year than I have in the whole 25 years of researching on my own. At first there was hardly any information and it was so frustrating to try to find out new medications and treatments to try. Then you try things by trial and error on your own because back then doctors were not that well educated, and frankly several of them still are not. More times than not I clearly remember taking a printout from a site to my doctor on a treatment or medication to try. That says a lot when the patient is more researched on a medication or therapy than his/her own doctor is. But it has happened and continues to happen because Migraine Disease is still a work in progress. At first they thought it was vascular and gave medications to control the constriction and dilation of the blood vessels thinking that inflammation from that was triggering the migraines. Then they thought it was chemicals and they gave medication to control the Serotonin in the brain because they believed Migraine Sufferers either had too much or not enough of it. Now they’ve come to the conclusion that Migraines are neurological because it affects the whole body and not just the head pain. Bingo a light went off in someone’s head someday to finally figure that one out. It affects the WHOLE body and the head pain is only 1 out of many symptoms and problems with a Migraine Attack. That is why when people have Chronic Daily Migraines they are so disabling it renders the person immobile and unable to work or interact with family and friends. Everything is too painful and hard to endure.

http://migraine.com/blog/recommendations-for-those-with-chronic-migraine/

http://migraine.com/blog/stigma-makes-it-harder-to-live-with-migraines/

http://migraine.com/migraine-basics/migraine-phases/

 sad kitty face

Over the past few years’s sufferers have started their own blogs to share their stories, their pitfalls, their success and trials along the way. I greedily ate up all the information, interacted with the Arthur of those blogs I really liked and got some really valuable information, and I bookmarked or subscribed to their page to get updates. I have so many bloggers I follow and each and every one of them is a source of invaluable information as there is no one spot on the web to get ALL your information from. I do have a couple of main websites that are my go-to for current information and updates and I really interact with all the writers who contribute with their stories and I consider their information top notch and invaluable. I consider these sites and all the authors to be my Migraine Mentors:

http://migraine.com.

http://www.puttingourheadstogether.com

http://somebodyhealme.dianalee.net

 

And these go-to sites I consider my fibromyalgia Mentors:

http://chroniclesoffibro.blogspot.com

http://fibro2010.com

http://debsfibromyalgiablog.blogspot.com

 

Of course I follow so many other sites I cannot list them all here and all the other bloggers are valuable to me as well for the information they put out there and the support and encouragement they readily provide.  I just started to blog last fall and I found it to be enjoyable to share my experiences and trials. Even if some of my experiences were not pleasant ones it was therapeutic to write it down as so many other fellow chronic sufferers can relate and interact with you and you can share stories. If you’re not a chronic Migraine of FM sufferer then you cannot understand the importance of blogging about a chronic condition that takes away your will at times. Those people have no business leaving negative feedback when they have not walked the walk. I had not encountered negative feedback on my blog until this past month, but I deal with it and consider the source-uneducated people that have not experienced the pain that we all have and still are on a day to day basis with constant medical help and no relief from pain. They are the cold-hearted and thoughtless and we encounter “those” type of people daily so we should have learned by now to let it roll off our backs like water off a ducks back and not let them get to us. Our goal is to interact and share with fellow chronic long term pain sufferers.

 angry-cartoon-woman-seated-shooting-computer1

And if the person reading this right now doesn’t experience the chronic pain of daily Migraines and the whole body experience that goes with it , or you do not experience Fibromyalgia then you should not read my blogs or leave comments. You should not visit anyone else’s site either that contain the same topic matter. No matter where you go you are bound to find mean spirited people so just ignore it-respond politely to their comment and go onto the next one and forget about the ones that don’t matter. As you have to learn to do in real life-interact with positive people and stay away from the negative ones as they are the ones that always want to bring you down. But if you have not blogged before I do encourage it because it is a rewarding experience and you do get a lot of positive feedback and you get to interact with others in the community as your list of followers increase and you increase your list as well.

 computer-cartoon-happy-guy2

So no, Social Media does not belong to just the teenagers and young adults anymore. And you are never too old to learn. So get online and get started today if you haven’t already.

 

Until the next time Blessings for a pain free day.

Julie

 

“Happiness cannot be traveled to, owned, earned, or worn. It is the spiritual experience of living every minute with love, grace & gratitude.” – Denis Waitley

 

Disclaimer: Nothing on this site constitutes Medical Advice. I am a patient who has been educating myself through the years and I am sharing my own personal experiences about Chronic Migraines, IBS, OCD, PTSD, Panic Attacks, Depression, Fibromyalgia and CFS. Contact your own Health Care Provider for information about your own particular needs and medical advice.

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s