14 October 2011

How to Form a Support Network

Whether we're talking about Crohn's disease, depression or any other subject, it can become important to cultivate a support network.  The particulars may vary, but I think what follows should be more or less adaptable to most people in one way or another.  Because this is October, I've used the Universal Monsters to illustrate my points.

Here's What I've Got Going On
"I've got this thing where I turn into a werewolf and strangle people."
Your first step is to admit to yourself what it is that you need support for in the first place.  How easy or difficult this step is largely depends on how self-conscious you are about the issue at hand.  For instance, I was initially reticent to discuss Crohn's disease but I quickly became something of an ambassador for the disease, spreading information whenever the opportunity arose.  With depression, however, it was quite difficult to 'fess up to anyone; only the unquestioned love of my wife made it possible for me to speak to her about my condition, and she made it possible for me to speak with my doctor, as well.  The rest of our family and friends were oblivious to the extent of my problems until this week, as I informed them after I was discharged from receiving treatment for depression.  Hopefully you have an easier time discussing your issue than I had with depression.

Note that you do not have to be comfortable telling the whole world.  I share my experiences in this blog, but I understand that most people aren't as willing to be so public.  That's okay.  Start with just one confidante, whomever he or she may be.  It gets easier to accept that you have the issue the more you articulate it to someone else.

Who Knows Anything About This?
"Yes, I can tell you all about vampires.  Look into my eyes..."
Once acknowledged, the next step is to seek out people who may know things about the issue.  If it's a medical condition, start with your physician--not only will he or she know stuff, but this is the person who can actually be helpful.  There's no substitute for a physician; only supplements.

Outside of the doctor's office, though, are myriad possibilities for finding other people who know about your issue.  Google is an obvious place to start.  A basic initial query might be, "[name of issue] [your city]" to see if there might be something local that might be of help.  There may be support groups, for instance.  You can remove the localized part of your query and simply search for the topic itself.  There will be countless hits on corporate sites shilling sundry products, of course, but you'll also find web communities devoted to the issue.  You won't find all of them informative or inviting, but if you bounce around the web long enough, you're bound to find one that feels right.

For me, one of the first places I found when learning about Crohn's disease was WeAreCrohns.org.  I "met" several Crohnies there and quickly struck up a rapport with them.  I learned quite a bit about experiences they had had over the years with various medications, foods, workplace interactions and other aspects of living with Crohn's that can only really be shared by people who have lived with the disease.  What I learned there was much more valuable to me than the dry science of how the immune system attacks the digestive system and fistula this and stricture that.
[Sadly, the WeAreCrohns site owners began to neglect the site and it became overrun by malware and spammers, so I do not at present endorse it.]
Also, if you use Twitter, just run a search there.  You're bound to find someone discussing the topic.  You may go through several false starts before you find someone helpful, but often when you find one person who resonates with you, you can find several more through that one individual.

One Topic Does Not a Relationship Make
"Yes, we're both abominations unto the Lord.  But you bug me."
What you'll quickly learn about forming a support network is that having that one issue in common--no matter how dominant that issue may be in your life--is insufficient for cultivating a meaningful relationship with someone else.  You know how, at family get-togethers there's always that awkward point where all anyone in a room talks about is whatever's on TV because no one can agree about anything else?  Even if what's on TV is the most important thing in your world, it's not enough.  It may get you through that family gathering, but you're not really going to call Uncle Joe and catch up with Cousin Stan next week because, frankly, you just don't like them that much.  It's okay.

What you want to find are people who get what you're experiencing.  It doesn't matter if they've had a better or worse time of things; I've identified with Crohnies who have had numerous surgeries and some who enjoy fairly functioning daily lives (I'm somewhere in the vast middle).  From there, you discuss other stuff but you know you can always come back to the common thread.  In fact, what I've found most helpful is not discussing the issue itself with other people who share the issue with me.  It's a reminder that there's more to me--and the other person--than that one issue.  I enjoy talking about movies and politics, for instance, with other Crohnies.  I like to banter about comic books and Mario Kart with other depressed people (we really need a clever moniker).  We don't always have to talk about Crohn's or depression to have a helpful, satisfying conversation.  Just knowing we share those godawful diseases is sufficient.

To Have a Friend, Be a Friend
By "be a friend," I don't mean, "drown the little girl."
Whether in a real life support group or in an online web community, people are all the same: No one wants to be around takers.  If you can't be a giver, then you should work on that first.  The group and its members will gladly indulge you as you regale them with your latest injustice at the doctor's office or let you cry on their shoulder about how something else in your life has gone awry, but if you don't reciprocate you'll find them far less interested in your plight.  You don't have to be nosy and ferret out everyone else's woes on a regular basis.  Just be attentive and supportive of other people in your support system.  You're in theirs, too, you know.