August 30, 2010

Chronically Connected

It's virtues are extolled: immediate access to information, improved work/life balance by working from home, and the ability to connect with others around the globe at a minimal cost.  It's also accused of great evils: removing the need for face-to-face communication, facilitating white collar crime, and leading to the muscular atrophy of an entire generation.  What else could have this affect but the World Wide Web!

While it's true, the internet can and is used for the "wrong" reasons and with bad results, the same can be said of religion, airplanes, or freedom of the press.  What's the common link among these ideas and inventions?  They ultimately become tools in the hands of human beings - well-intentioned but imperfect Mankind. 

But just as religion gives billions of people a framework for life, airplanes deliver food and supplies to disaster zones, and free press led to the birth of our nation, the internet gives millions the resources we need to improve our lives in ways never before imagined.  It would have taken our unplugged ancestors a generation or two (or more) to assemble - let alone process - the volumes of information we can now find and search in just a few seconds. 

This access is wonderful, and a gift I make use of many times each day.  However it is not, perhaps, the greatest gift the internet provides. 

Humans are social creatures, hard-wired to need interaction with others - also known as a 'community'.  If you don't believe me, go ahead and use that powerful internet search tool to read about otherwise healthy babies who die in understaffed orphanages for lack of touch or how solitary confinement causes psychophysical distress by denying human interaction.  Or, check out this scholarly article about the science underlying this phenomenon.

We seek to be both one of a million and one in a million; that is, we want to be simultaneously reassured we belong and that we are unique persons whom no one could replace.  But we wouldn't know if either goal were met without KNOWING and RELATING TO other people!  And so we join clubs then seek a leadership role, attend block parties and talk about our latest vacation, or play a team sport and dream of being named MVP.  For the chronically ill, I've found that this mindset takes on a very specific form.  We want to find others with the same symptoms or diagnosis as ourselves, and upon making this connection we immediately begin spouting off our personal stories, complete with symptom progressions, medications, prognosis, and views on the future.

Knowing that I am one of a million (or, in my case with Sjogren's, one of 4 million) Americans with my diagnosis is important to me.  It means information may be available about how to cope with many of the problems I face, and that it's been around long enough for there to be data for use in framing a prognosis.  Moreover, because I know other Sjogies exist, I am guaranteed to find people I can talk to who I know will understand what I mean when I try to describe weird symptoms or processes I go through, and if they understand that must mean I belong.  At the same time, finding these people reaffirms that I am still one in (four) million - we may have the same diagnosis but none of us have exactly the same experience living with it.  There's the obvious differences - severity of symptom progression, comorbid diagnoses, or age - and less obvious ones, e.g. personal stances on specific treatments or even reactions to the same medication.

To my point, social networks or interactions are part of human nature, and take on a prime importance when people are faced with challenges.  Chronically ill persons face the same challenges as the rest of society, but must also cope with their special challenges every day at the same time.  Therefore, it stands to reason that these people experience a greater need for - and find greater benefits in - social venues.  And yet, social excursions often require people to do the very things that are problematic for this population.  Mobility problems, unpredictible symptoms, extreme fatigue, and "brain fog" (or reduced ability to think logically) are just a few roadblocks.  When added to the plethora of 'extras' most of us carry (medications, comfort aides, water bottles, sweaters, joint-support paraphenalia, etc), it rarely becomes worth the effort.  And to top it off, a lot of chronic illnesses and the methods used to treat them make the patient susceptible to contagious illnesses such as colds, flus, and infections.  It's a wonder we don't all become hermits!

But, without these social connections, we are left very vulnerable in every way.  Ill or not, we must have information, access to resources, and support.  We all generally find a way to get to the doctor or pharmacy and meet our physical needs, but for years we simply couldn't find a reasonable way to meet our emotional ones.  Which brings us full circle, to the World Wide Web.  Now, we can find each other.  Now, we can join groups and discussion boards that will fit into our schedules instead of disrupting them.  If I can't sleep at midnight but crash out at 2 in the afternoon, I can post something at night and read someone's response the next day without us needing to be present at the same time.  Instead of being subject to the opinions and educational limitations of one doctor I find the energy to see, I can scour the web for more ideas and insight and take an active role in my care.  And even to my own surprise, I can develop REAL relationships with people I've never met (and probably never will).  A woman undergoing chemo in Alabama is now just as important to me as people who live in my town.  Another woman 3,000 miles away was the first to tell me when she found my group in a newsletter (that I don't even receive and would never have seen on my own).  And, I hope, my stories and advice may be positively influencing someone out there who might never have even pursued treatment if they hadn't heard that something could be done, or know that I care when the 'real' people in their lives turned their backs. 

And so, to the many who are trying to unplug, I tip my hat and offer best wishes that they find the peace of mind connectivity may have stolen from them...and I turn, pick up my laptop and BlackBerry, and settle in to enjoy the gifts of being Chronically Connected.

August 23, 2010

IIAW 2010: 30 Things...

You may recall, I began this blog ast September as part of National Invisible Chronic Illness Awareness Week (IIAW).  Well, it's nearly that time again!  This year, the National week will be September 13-19, 2010!  As part of the kickoff, Lisa Copen (founder of both IIAW and Rest Ministries) has brought back the HUGELY popular survey about our unique experiences with chronic illnesses.  I encourage you to fill this out for yourself (no matter what diagnoses you may have) and repost.  If you do, remember to put a link to your post on Lisa's IIAW website!
30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Sjogren's Syndrome, Localized Scleroderma, Fibromyalgia, Dysautonomia, Osteoarthritis, Raynaud's Phenomenon.

2. I was diagnosed with it in the year: 2001 when I was 15

3. But I had symptoms since: 1988 when I was two

4. The biggest adjustment I've had to make is: I adjusted what I wanted to do with my life – now I'm focused on building UII into an established not-for-profit organization.

5. Most people assume: My age means my conditions don't affect me as much as they do older people.

6. The hardest part about mornings are: Moving.  Most of the time I'm stiff and my upper back is messed up from the way I slept.  Sometimes I have morning stomach aches and am very nauseas, especially if I woke up too early.

7. My favorite medical TV show is: I can tolerate Royal Pains but that's it.

8. A gadget I couldn't live without is: Microwavable heating pad.

9. The hardest part about nights are: Temperature and humidity changes from the daytime (could be getting better or worse, a change is hard no matter which direction).

10. Each day I take _9 (not counting pain killers)_ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: had success with a combination of chiropractic adjustments, moist heat therapy, and mild electro-stimulation for my back (though the benefits were absolutely systemic).  However, the practitioner I went to closed and I haven't found a doable replacement.

12. If I had to choose between an invisible illness or visible I would choose: I wouldn't pick solely based on visibility.  Ask me about what the illness affects, I'd have an opinion.  But the entire point here is that invisible illnesses are JUST AS debilitating as visible ones, not that they're MORE severe necessarily.

13. Regarding working and career: while I have revamped my long-term career goals to be focused on my conditions, in the meantime I'm working a demanding fulltime job.  Most women I know with similar conditions are middle aged or older and had to give up their careers.  I was diagnosed as a teenager and had to face what if I never got to start my career.  I've managed to get to the starting line but am competing against smart young people usually without chronic complications, and every day I make it to work I know the rest may be numbered and my life could flip at any time.

14. People would be surprised to know: I doubt myself and question my limits every day.  Everyone tells me (close friends and web acquaintances alike) that they can't understand how I do so much and I seem to have such energy – well, I don't say that as if it's some great power of mine.  It's my deep seeded fear of what I won't be able to do tomorrow so I have to do it today.  At least it cured my adolescent procrastination…

15. The hardest thing to accept about my new reality has been: the roadblock it creates to forming friendships the traditional ways – though it has been the reason I learned just how great online networks can be for building real relationships!

16. Something I never thought I could do with my illness that I did was: my job.  I'm an auditor, which means 40 hours per slow week, and 60+ hours per busy-season week.  Every day I do tasks that don't require a second thought for other people but are a challenge for me, from traveling to carrying files around all day.

17. The commercials about my illness: don't exist.  Well, there's a few about Fibro (which rely on sparkly images to indicate nerve involvement) and osteoarthritis (which show hunched over women who straighten up when taking new medicine).  I've never once seen a commercial for Sjogren's, Scleroderma, Raynaud's, or Dysautonomia.  Oh my.

18. Something I really miss doing since I was diagnosed is: walking in the rain.  I actually don't like storms, but if I had to get caught in a basic downpour or drizzle it was no big deal and could be kind of fun.  Now I go to great lengths to avoid getting wet in the rain, and even so have to combat the joint problems rain brings.

19. It was really hard to have to give up: color guard and singing.  In high school, I was a strong member of a competing color guard and had to skip the year I was diagnosed.  While I finished out the last two years in high school, it was by the skin of my teeth and I couldn't continue in college.  Singing, which had always been one of my favorite things in life, lasted a year into my college experience, but after that I began to find my Sjogren's dryness has damaged my vocal chords/throat just enough to make formally singing in a group impossible.

20. A new hobby I have taken up since my diagnosis is: blogging?  Is that a hobby?  I was diagnosed very young so it's hard to say, because I think I would have gone through many interests in the past 9 years anyway.

21. If I could have one day of feeling normal again I would: I don't know what that feels like.  I had joint, eye, and mouth symptoms going back into my early childhood among other problems.  However, if I could have a time of physical abilities back, I would spin a color guard show one more time.

22. My illness has taught me: to gear my life toward others and be proactive.  If I go through something bad, I make myself ask "how could people who will face this next be helped, and what do I need to do to make that happen".

23. Want to know a secret? One thing people say that gets under my skin is: "well at least you don't have ____".  I've said it before and I'll say it again – if you total your car in a horrendous crash and break both your legs, yes, it's true it could be worse because at least you're alive – but you still have two broken legs!  Why do people think just because it could be worse it isn't bad at all?!

24. But I love it when people: ASK ME QUESTIONS (for information, not to 'prove me wrong').  I love when people ask me what my conditions are, how they affect me, how a specific situation might impact me, what I do about problems, how I want them to help me, etc.

25. My favorite motto, scripture, quote that gets me through tough times is: I have to be honest, I have different ones for different situations.  I have a ring that says "Live His Word" to remind me to have good motives.  I have a bracelet that says "The greatest thing we can do for our Heavenly Father is to love His children" which reminds me to turn the other cheek.  The quote by Shelby in Steel Magnolias sums up my fears about my life "I need your support.  I'd rather have 30 minutes of wonderful than a lifetime of nothing special".  And, the Robert Ingersoll quote, "it is a blessed thing that in every age someone has had enough individuality and courage to stand by his own convictions," keeps me from getting jaded.

26. When someone is diagnosed I'd like to tell them: do your research, and hold to your priorities.  While you can't put your head in the sand, you don't have to give up everything that makes you happy either – if spinning color guard or going to the shore or hiking mountains is what makes you happy, gear your health plan toward that goal instead of telling yourself it's gone forever.

27. Something that has surprised me about living with an illness is: the self-respect it helps teach me.  Yes, I often feel bad about myself, hate my body, or feel guilty for how I impact those around me…but I've learned that it doesn't mean I have to put up with cruelty, being marginalized, or being used.  I have so much to do and so little time and resources in which to do it, I don't have time to be bullied.

28. The nicest thing someone did for me when I wasn't feeling well was: my family does wonderful things all the time, but my favorite "little thing" is this: my best friend always asks me where I hurt today before she hugs me.  It could be months since we've seen each other, she could be in the middle of a crisis, and everyone around us can be acting crazy, but she doesn't lay a finger on me until she knows how to hug me without hurting me. 

29. I'm involved with Invisible Illness Week because: it takes the issues I work with every day (personally and for UII) and builds them into a frenzy on the national stage!

30. The fact that you read this list makes me feel: Visible.



Are you blogging for Invisible Illness Week? Be sure to sign up and let us know at Bloggers Unite!