Social media to the rescue?

Social media is a wonderful thing.  It allows us to keep in touch with friends and family that, in today’s mobile society, are spread out across the country.  It allows us to make new friends with people in different countries that we would not have otherwise had the privilege of meeting.  It also allows us to form select communities of people who are united by similar interests, hobbies, political affiliation, and a special love for cute, cuddly animals.  Let’s face it, if all social media sites were to simultaneously go down, we as a society would be hopelessly lost.  It has become the backbone of our existence.

On a personal note, I have found that, via social media, I have been able to connect with others across the nation who have had the misfortune of being diagnosed with neuroendocrine cancer.  Since I do not know anyone else who has been diagnosed with this cancer, it has been a rather lonely journey up until this point.

Let’s face it, if all social media sites were to simultaneously go down, we as a society would be hopelessly lost.  It has become the backbone of our existence.

I have not had anyone to ask about the potential complications and side effects of certain procedures and if I find I’m plagued with a particular problem, I can jump onto this wonderful Facebook group and see if anyone else has suffered from this issue and what they did to help alleviate the symptoms.  At first I thought I had found NET cancer nirvana; however, after being a member of the group for a while, I noticed a disturbing trend.  Groups like this one actually give a forum for whining and a way to “one up” each other with our particular ailments.  There have actually been days where I have found myself getting depressed reading all the posts and I have started to wonder if I really am worthy to be a member of a community with so many more problems than I am experiencing.

After being a member of the community for a short while, I discovered there are several key characteristics that define each member of the group and I was able to form a list of situations and circumstances that must preclude membership into a community such as this.  I call it my “you might have a chronic illness when” list.  Here is what I have observed:

A. You get excited over the hype surrounding the latest advances in pain management medication. If there is one thing I can relate to with this group is the debilitating effects of chronic pain.  NET cancer causes an interesting array of abdominal pain, skeletal/muscular pain, and just a general sense of being unwell.  I have taken OTC medications, gabapentin, Lyrica, flexeril, hydrocodone, and Tramadol to no avail. Honestly, I had quite given up all hope of ever feeling half way decent again and settled into my new life punctuated by chronic pain. Then, one of the group members mentioned Mobic and what a miracle it had been for them.  Their glowing report got me to thinking this medication just might be my saving grace and, thankfully, my doctor was more than willing to try it to help with the pain associated with splenomegaly.  Let me just say it has been an absolute miracle.

B. It makes your day to discover a highly skilled surgeon just joined your doctor’s practice.  I’m not too sure that anyone who has not experienced the fun that comes with finding specialists who treat rare diseases understands the stress related to finding care, but in the case of NET cancer, it has been a challenge.  Many members of this group travel great distances to receive treatment and incur incredible expenses in order to receive top notch care.  All this travel takes an emotional and physical toll.  One member of the group wanted to know if it ever gets any easier making long distance trips to receive medical care.  In my experience it only gets harder, not easier.  Currently, I am traveling to New Orleans and to a specialist that is only an hour from our home. Unfortunately, the practice closest to me does not offer a wide array of specialized care causing me to travel to the New Orleans clinic for surgery.  Now, months after my first major surgery, the clinic nearer to my home just brought a skilled surgeon on board who can do these intensive surgeries and many people are chomping at the bit to be taken on as a new patient as a result, which leads me to my next observation:

C. You can brag that you are being treated by a specialist that others are chomping at the bit to be able to see.  Again, finding a practitioner who specializes in NET cancer treatment is rather difficult and the clinics that have specialists are few and far between. I have been blessed to have a doctor only an hour away from home who is one of the leading specialists for NET cancer in the nation and I was able to be taken on as a patient just months before he stopped accepting new patients.  Since then, I have seen many a post from people lamenting the fact that cannot get in to see him and have to travel elsewhere for treatment; in the NET community, I now have special bragging rights.

D. Your Facebook newsfeed has more posts from chronic illness groups than friends.  This phenomenon took place rather slowly, but now I have noticed that most of the posts in my feed come from the variety of chronic illness groups in which I am a member.  There are days when I cannot even bear to check my Facebook because I know all I’ll see are posts of people who are experiencing horrid side effects, too exhausted to get out of bed, or just having general struggles.  This makes it difficult to see the silver lining when I’m struggling in my own life to keep it all together.  Instead of offering encouragement, it seems to have quite the opposite effect.

E.  You follow people on Twitter based on the type of illness they suffer from.  When I was first diagnosed with NET cancer, I was hungry for information and one of the first places I turned to find information was Twitter.  After doing some research, I found several people and organizations that specialize in NET cancer and started following them and the information I gleaned from these was extremely helpful to someone who was just learning to navigate this disease.  Then, others began to appear in my recommendations who had similar illnesses and I found myself choosing who to follow based on the disease they suffered from.  This has been both beneficial and harmful depending on the type of day I am having.

After thinking about these trends, I have come to the conclusion that those of us with chronic conditions can offer so much by way of support, but by airing our struggles we can also be detrimental to those who are trying desperately to make sense of a life that has been turned upside down by disease.  We all struggle at some point during our illness and we need encouragement to be able to face the day with a positive attitude.

By allowing ourselves to be bombarded by others facing stressful situations can make one feel either inferior because our health issues are not as trying, or even more hopeless as we look for affirmation that life can and will get better with time.

By allowing ourselves to be bombarded by others facing stressful situations can make one feel either inferior because our health issues are not as trying, or even more hopeless as we look for affirmation that life can and will get better with time.  It is important to have a strong support system when battling a disease like cancer; however, it is my opinion that we need to be very careful with social media.  These sites can be a great outlet for our frustrations and pain, but it can also be detrimental to our mental/emotional state as well.  Just like with strong pain medication, care must be taken with how much we subject ourselves to and, when we begin to feel overwhelmed, take a step back and critically assess both our situation and the effect social media is having on our overall well-being.

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4 thoughts on “Social media to the rescue?

  1. Great post. I echo many of these same sentiments – especially the whining and one-upping. I also shelter myself from these groups, but also know they can be great sources of hidden secrets. 🙂

    Like

  2. A moderated message board is time-consuming for the moderators, but could allow the truly useful information to be posted and screen out the whining, bragging, and one-upping. There are always places for people to post frustrations, but harder to find screened information.

    Like

    1. I think that many of the people who subscribe to these boards just need a safe forum to vent their frustration with life. I know that I sometimes abuse my personal Facebook page because I just need to whine a bit, but it would be nice to find one that is in the business of sharing information.

      Like

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