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Sharing our experiences, our ups and downs, the lessons we’ve learned through the challenges we’ve endured…sharing our lives with likeminded folks and with those who are different from us is something all people from all nationalities find important.  It’s nice to know that we’re not alone.

Especially when you have a “rare” disease like CRPS.  The condition itself, by its very nature, is ISOLATING.  “Don’t touch me!” and “I’m sorry, I can’t do that today,” are its refrains.  Stuck inside our homes and stuck inside our bodies that aren’t really ours, stuck in a depressing tangle of thoughts and emotions made more complex by the limbic system dysfunction caused by CRPS/RSD, which seems to attack EVERY part of who we are.  Being stuck is scary and disorienting.

It becomes even more disorienting when friends, family, and medical professionals tell you the pain isn’t real and “If you would just get out more, you’d feel better”.  It’s disorienting to experience pain with touches that were once comforting.  It’s disorienting to find the very things you loved in life most – music, the breeze, the rain, wearing cute shoes and clothes that swish, driving, walking in the snow…or walking at all – now cause pain that is itself impossible to describe to anyone who doesn’t experience it without using terms that are both graphic and gory and once again…isolating.

But hear me out here.  Because I am not trying to paint a picture of hopelessness for those who have CRPS.  In fact, the reason I’ve pointed out the barriers to sharing our lives with others due to our condition of CRPS/RSD is because it makes the ability to do so that much more appreciable.  

People who have rare conditions like CRPS are some of the most creative and courageous problem-solvers I’ve ever met.  They are willing to use any and all resources to survive.  Surviving such an all-encompassing condition healthfully, however, requires more creativity and knowledge than any one person could posses.  It come as no surprise that treating a patient with CRPS/RSD would require a FULL TEAM of doctors rather than just one or two.  In the patient’s world, successful treatment requires connecting with others.  Such interactions are vital!

Other people who have similar experiences (CRPS/RSD) are able to:

  • Understand
  • Give emotional and practical support
  • Validate each other’s experiences
  • Add ideas to the think tank to help problem-solve and make each other’s lives easier
  • Applaud the “small” victories that others without similar challenges wouldn’t necessarily see as significant
  • Receive support to help those providing support feel that they are needed and valuable, an asset

Those who have different experiences are able to:

  • Provide a different point of view that allows CRPS/RSD-er’s to look at a situation perhaps more objectively or to see ourselves through someone else’s glasses
  • Add fresh ideas to the think tank that haven’t been explored before
  • Respond courteously to others’ opinions (even when contrary) so that both parties are able to further appreciate diversity’s ability to cohabitate with respect

The lists above are far from exhaustive, but you get the idea – there are many positives to sharing with others.  I’d be remiss to tell you that there aren’t negatives as well.  Surely they are, as we’re all human and we make mistakes.  Sometimes people will say things we feel are hurtful…sometimes we’ll say something out of frustration or it will be misinterpreted by the recipient…sometimes people slip up and expose details of their lives or someone else’s life that they wish they had not exposed so openly…some interactions leave us feeling a bit more drained than we’d anticipated.  Such is life, right?

This is why, in my pursuit of mutual support in the international CRPS community, I’ve sought QUALITY interactions over quantity interactions.  Some may choose quantity over quality – who am I to judge?  Personally, I’d rather attend a support group that has a positive vibe and energy as opposed to one that spends its time stewing in complaints and negativity, whether that “support” group be local or virtual.

Through the blessings of modern technology, I HAVE OPTIONS!  😀  ADHDer’s love options!  Not only do I have many options to join virtual CRPS support groups and chat rooms, but I have the option to participate in international support groups as well.  Folks in other countries have often received different treatments for their CRPS/RSD than I have, and they may be privy to information and ideas to which I’ve never been exposed.  They may have cultural views I’d not previously considered.

Skype and cell phones make speaking with others an affordable option, even internationally.  Seeing someone face-to-face who walks the same paths in life is an amazing experience, frequently leading to a special bond.  Technology also allows us to find others who live in our local area and who have this condition.  How cool is that?!  😀  I’ve received LIFE-CHANGING information and doctor recommendations (as well as life-saving warnings against certain doctors – thank you!) from such interactions with people who live locally and who have this condition.  Technology allows caregivers and loved ones to “enter into our world” for a look at the inside, how we feel and think, ideas about how they can better support our fight.  It provides them with much-needed support and opportunities to network with other caregivers, to express their personal concerns and share coping strategies.  Reading others’ blogs is very encouraging for me.  It gives me the chance to realize that the depth of emotions and challenges I’m facing are not uncommon.  Blogs help me develop realistic expectations and inform me about important treatments like Spinal Cord Stimulation from the patient’s point of view (rather than just the doctor’s!).

This Thanksgiving, I am very grateful for such interactions, both with people who share similar situations and with those who have varying perspectives and situations.  As I engage others and myself in these interactions, I’m rewarded by my brain buzzing with new ideas and concepts, getting a breath of fresh energy to conquer challenges or at least to try again tomorrow, and enjoying a sense of usefulness (all too easily lost to CRPS/RSD) because I’m able to also help someone else.

What is your favorite way to connect with others who either share your situation or who have different perspectives?  Let me know below in the comments!

Gutsy Girl

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Comments
  1. Fab post hon’, it’s been wonderful posting together like this and I am amazed that you managed to write such a gorgeous post after hospital appointments, too. You’re a superhero!
    Big hugs and love from me, xx

  2. […] & Why We Need ItIsy in the USA: International group post: Love is PortableSarah in the USA: International CRPS Support om/2013/11/26/international-crps-support/Suzy in the USA: Dancing Through The Fire… AND… You’re Gonna Hear “US” Roar! *an […]

  3. jcerrone says:

    This is a great post! I enjoy following your blog and I hope you don’t mind if I list you as a great personal blog resource for CRPS on my site?

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