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Posts Tagged ‘support systems’

Valentine ’s Day is right around the corner and stores are displaying merchandise and cards for the occasion.  I started thinking about the messages sent by some of the big companies like Ma Bell and Hallmark and what’s been lost with the invention of Facebook and other social media.  Ma Bell wanted us to “Reach Out and Touch Someone”, and Hallmark told us buying cards, “When You Want to Send the Best”.  These two company taglines spoke more, to me, than just about commercialism, but how we interact in the world.

I’ve watched the number of birthday cards dwindle significantly over the past four years.  I used to have a mantle full of cards, and now it’s down to a select few.  Don’t get me wrong, I get plenty of Happy Birthday messages on Facebook, but it’s different.  We no longer have to plan on how we interact.  We are now able to wake-up in the morning and see who we need to send a birthday wish, congratulate for an achievement, or commiserate about a dilemma.  What happened to sentiment?  Have we lost the ability to connect more than electronically?

I sent out a bunch of cards today because there are people who I haven’t spoken to in a while that I wanted to send a special message.  I want to appreciate certain people who have supported me, kept me in the loop of their lives while I’ve been traveling the country.  It gave me an opportunity to say I took the time to spend a few minutes devoted to connecting with you.  I know I may be a bit over the edge, but social media has left too many people connected to others with only a dotted line, and they’re still lonely.

When going through difficult times we need to make those phone calls, send those calls, and show that we’re making an effort and that this person matters to you more than just a count on your Facebook page.  Illness, divorce, death, financial struggle to name a few are life events that require deeper connections to emerge with a sense of peace and to have the ability to continue on life’s pilgrimage!

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There are events in our lives that as a culture we all remember like the day Kennedy was shot (if you’re old enough to remember).  On a more personal level there are experiences like graduations, significant birthday celebrations, weddings, and other momentous occasions.  Unfortunately, for those diagnosed with a chronic or life-threatening illness, a period in your history that stands out is when the doctor says those magic words, “I’m afraid to tell you but…”.  When I facilitate groups and members tell their diagnosis stories there is an understanding, an empathy, and most of all compassion amongst the group members because everyone remembers the day that their world stood still (even if just for a moment).

So what is it about your diagnosis that cracks you open?  Well it’s obvious that whenever we experience a trauma (and a diagnosis is a trauma) the assumptions we had about life are shattered.  It doesn’t mean that you disintegrate; it just means there is a vulnerability that may not have been conscious prior to that point in your story.  It’s this vulnerability that those who believe their illness was a gift focus on as they move along on their journey to wellness.  I was diagnosed with an auto-immune disease as a pre-teen so I grew up with an illness (which I’ll address at a later date), but vulnerability can be the doorway to deeper understanding of your soul.

Over the past 25 years I’ve seen individuals and families reach new levels of self-knowledge, connection, and joy following the diagnosis of a health challenge.  This is where quality of life and relationships becomes the frontrunner for your time and attention.  It also allows you to focus on those things that Tim McGraw sings about in his song, Live Like You Were Dying.  It’s not about the big momentous things, but individual experiences like how you speak to others, how you relate to your family and friends, and most importantly focusing in on what brings you joy.  Let’s face it, joy sparks the immune system and that is important on your journey to wellness.

I know it’s scary to delve into those vulnerable places, and that’s why doing it with support is so important.  It’s about having someone who will accompany you on your journey so that when the surprises happen, and they will, you have someone who can always point your toward your own north star.  It can be a friend, a health and healing coach (such as myself), a spiritual director, a psychotherapist or anyone you trust in and has your best interest at heart.

What have you found to be unearthed vulnerabilities since your diagnosis?  If you’d like to share your experience you can leave a comment below or email me at greg@survivingstrong.com.

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Ever watch those amazing folks that set up dominos and when they hit one it triggers this chain reaction that is amazing to watch?  I feel that way a lot of the time in my life.  I see something, read something, or experience something that triggers one thought after another…sometimes the ride is fun and sometimes it’s a bit bizarre.

I’m working in a different state from where I live and while I was driving, maybe because I felt a little lonely, I “really” noticed all the New York license plates on the cars (after all I am in New York).  Us out-of-state folks were truly not part of the mix.  That’s when the domino theory started and I felt even more like a stranger in a strange land.

I know this happens to many of you following your diagnosis of a chronic or other life-altering illness.  You feel like you get plopped into another universe where the rules are different, the language is different, and truly the culture is different.  This can trigger that experience of loneliness, and feeling alone and/or isolated is not conducive to creating a health and healing environment for your body, mind, and spirit.

I’m not suggesting that you invite your doctor over for your weekly poker game (odds are good she won’t come) but to find a community of peers who you have a bond with or are at least willing to pick up enough key phrases or ideas so you can talk (kind of like getting ready to go on a trip and learning enough of the language to be able to eat and go to the bathroom).

I’ve watched many people over the years hint at an illness when talking to someone hoping they ask the right question…”Are you sick? Do you have?” instead of you being the one who has to spill the beans.  I find this to be especially true for me when I go out and don’t order alcohol.  I haven’t had any alcohol since 1992 because of the negative effects of alcohol on my liver as a result of the medications I take.  The “no alcohol” triggers a set of questions for them and I have a choice, I can either tell them about my auto-immune disease or tell them I’m an alcoholic because that’s almost always what they’re thinking.

Organizations that serve individuals and families with a particular illness often have support groups.  A support group is a great place to find partners-in-crime who you can discuss your experience with and create social ties so you reduce or eliminate your feelings of being isolated.  In my case I’ve had my disease most of my life and I’m not looking for support in that fashion, but I do find it from national  organizations that write newsletters and have fund-raising events for research; there I find the comfort in knowing I’m not a stranger in a strange land.

It can be a difficult transition finding that new tribe or even believing you need a new tribe.  The fact is your life circumstances are very different from many you know and it’s not that they dont’ want to understand, it’s that it may take them a long time because they aren’t having a personal experience; their exposure to your health challenge is through your eyes giving them your perspective.

Support is important so seek out those who can support you so you feel a part of the local community in body, mind and spirit.

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How do you feel when you spend time with friends and family (okay for some maybe just friends)?  Do you feel good?  Relaxed?  Happy?  Studies show that the lack of social connections can be as bad for you health as smoking, lack of exercise, or poor nutrition.  Don’t you think that’s an incredible study outcome?  You can feel better if you have enjoyable social connections.

As I ride the bus, for most it’s a solitary time.  I have a stop where I transfer from one bus to the next and I’ve seen this one woman every day; and she’s always reading.  I made the comment, “It’s so nice to see people reading”.  She proceeded to tell me about her reading habits and those of her children.  I saw her this morning and I started a new book and she asked me what I was reading.

Where am I going with this?  Well first of all acknowledging the personhood of another is quite validating.  When you have a common interest with another it makes the connection stronger and faster.  It’s just nice to be able to talk to someone about something your interested in and want to share. 

How does this apply to you after being diagnosed with a chronic or life-altering illness?  Support groups are a great place to have your experience validated.  When I worked in nonprofit organizations with those facing a health challenge; the greatest effort after basic services was about creating community.

When you have a community, or a tribe, you feel like you belong.  It doesn’t matter that you don’t want to be part of the illness tribe; it’s not a choice you have so how are you going to reframe it for yourself.  Meeting people with similar challenges doesn’t mean that your relationship has to revolve around the illness.  It does mean that these people will be a bit more understanding if you have to cancel last-minute due to health.  They will know and inquire about how you’re doing when you going for treatment.

Having a network doesn’t mean you have to live in the world of illness.  It does mean that picking people who have an understanding for your current life situation is affirming.  It means that you don’t have to be along on social, emotional, or spiritual fronts.  Try it out and see what happens!

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Day in and day out we hear about the big name illnesses.  Those are the life-altering illnesses that receive celebrity endorsements, create foundations, have huge money for research and a community so people don’t feel alone.  What about those illnesses that don’t fall in that category.  This week I watched “Extreme Makeover: Home Edition” featuring a young girl who has an illness that only 25 people in the world have…can you imagine.

During the show, they brought in another child who had the same diagnosis and the bond was immediate.  The relief each of these children felt was palpable.  Feeling like you come from another planet does not aid in creating the fighting attitude to conquer the challenges of a life-altering diagnosis.  It’s when we can say to someone, “This is how I’m feeling” and they can respond honestly “I know how you feel” that we feel understood.

Maybe one of the best things we can do it when we encounter someone with someone with an orphan illness, simply give them the space to share their experience.  This isn’t about solving anything, but giving them the platform to be seen and heard.  It’s a great time to give these individuals and families the opportunity to step out of the shadows.

Illness is lonely enough, and as a pilgrim walking this path can be daunting.  Fortunately, many people with these diagnoses have doctors that can be their Sherpa on this path.  These doctors are often doing research to gain information and in turn create treatment strategies.  We all can use a Sherpa to help us on what is often a long and arduous journey.  Who’s your Sherpa?

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