Please Help! Chronic Illness and Meeting People, Part 2

I’m so torn.  For me the answer is as follows:

It depends on my mood.  And how a person makes me feel.  And where I am.  But mostly I don’t tell them unless I have to.  In fact, since my diagnosis in 1998 (at age 14), I have lived in (minus my 10 semesters at college) the same small town.  And, during my flare up last spring, I learned quite a few people whom I have known for the entirety of that time had no idea I have a chronic illness.  I consider this amazing.  They are either… very kind and gave me the benefit of the doubt on countless occasions, or very forgetful.  Either way it meant a lot to me.

On the other hand, it means just as much to me to think of the hundreds of folks who know I struggle with health challenges.  They haven’t made it their business to tell people.  They haven’t made it their business to make a scene when they can tell I am not feeling well.  Quite the opposite.

Anyway, back to the point.  When I have to tell folks I just say it.  Something stupid sounding, I’m sure.  But I always say it matter-of-factly.  “I have fibromyalgia and osteoarthritis.”  I then typically downplay whatever symptom or situation has necessitated my discussing my invisible illnesses.  And I am usually tempted to crack a joke.  But I typically resist the immature urge.  Because it’s not a joke.  And I don’t treat it lightly (that doesn’t mean I act like it’s the end of the world, either).

Live Well, by SilverRiverMetal
Live Well, by SilverRiverMetal

Once I’ve told people I’m pretty open.  I don’t inflict more pain on myself by trying to mask a limp as I walk (like I normally do).  I am myself.  And I don’t pretend to be otherwise.  Frankly, once someone knows I feel more comfortable and less confined.  WARNING: I find that this can be dangerous.  I find that the fewer people who know about my health issues the more motivated I am to live well.  (And I don’t mean well as in good, I mean well as in not ill.)  The more motivated I am to level with the fact that there are countless things I can do with fibromyalgia.  (And very few things I can’t do.  For the most part I lead a very normal life.)

When people know about my fibromyalgia it is especially important to stay motivated and to refuse to excuse an effort that is inconsistent with my capabilities.  I think this is the biggest struggle for me and my fibromyalgia… as I discussed here and therefore fall short of our purpose..  And, to be honest, I think it’s a healthy and helpful one.  It is far too easy to fall pray to excuses (although there is plenty of room for reasons with fibromyalgia).

So whether your new friends know, or don’t, remember they can challenge us to find the limits of our capabilities and push them slowly.  Kinda like stretching.  But be careful not to over do it.

5 Responses

  • hagar's daughter on January 21, 2009, 00:02:28

    I’ve had fibro for 9 years. I work full time and went to seminary full time in an attempt to live “normally.” I found this counterproductive for ME. I live in what feels like a constant flare for the past 2 years and have used Urgent Care to manage my work situation. It’s hard for me. I’m now having other symptoms. 2 weeks ago I found out that I have neuropathy in my legs. I haven’t worked this year because of the fatigue, inability to concentrate, and pain.
    Sorry to go on and on…

    About meeting people and disclosing: It depends on the circumstances. I do so only on a need to know basis usually because someone has an “answer” or they “know what I’m going through because they feel tired too.” Most of the time what they describe is not FMS or CFS.

    Reply to hagar's
  • Andrea and Heather on January 21, 2009, 15:11:50

    Neither of us tell someone on the first meeting, unless of course, we know they’re fighting the fight too. Most of the time, we just don’t share it. We’re not embarrassed, however, its is very easy for others to label or categorize others based on their ailments or talents. There is more to us than fibro, so it isn’t something we lead off with when meeting new people.

    We are so glad to have found your blog. Mind if we blogroll you?

    Reply to Andrea
  • Rochelle on January 21, 2009, 20:51:09

    Great insights here!! You’ve said so much of what I want to say but can’t think of to say… I so appreciate you and your way of thinking. Thanks for being real and honest with us.

    It definitely depends on the situation/circumstance for me too. It is like living on a roller coaster ride day in and day out. Ughhhh.

    I’m so glad you stay motivated and avoid excuses as best you can.

    Reply to Rochelle
  • mark on January 25, 2009, 09:57:55

    K8 interesting to hear that a lot of folks in your community forgot about your illness. Funny; People are just dealing with their own problems I guess. Good to hear how others are coping. Sounds like you have adjusted well to living with your illness and have a great way of communicating it. I’ll check back in on you later.


    Reply to mark
  • K8 on January 25, 2009, 17:35:37

    Hagar’s Daughter: I am sorry to hear about your neuropathy.

    FibroFoggies: I’m glad you found me. Go for it! I’ll do the same.

    Rochelle: You are welcome. Real and honest are all that will help us as we strive to lift each other out of flares.

    Mark: You’re right. I think we’ll all so wrapped up in our own issues we fail to remember others. Perhaps that’s a blessing. I’m not sure.

    Thank you to each of you for participating. Your opinions are helpful and I appreciate your perspectives.

    Reply to K8