How do you explain “it”?

September 13, 2011

I came across this video today, and it got me thinking about the different levels of understanding that other people have.

 

Of course, the people who best understand what it’s like to live with chronic illnesses are the people who have chronic illnesses themselves.  If you’ve got them, you probably have a pretty good understanding of the difficulties, the unpredictability, the social isolation.  Yeah, fun stuff, right?

 

I’d say the next layer are the people who knew me back before the illnesses/symptoms.  These are the friends and family who don’t have CIs themselves, but they’ve watched me go through it.  They’ve been there for me, supported me, seen the ups and downs.  I may not tell them everything, but they know more than anyone else possibly could.  And they know what to expect.  They don’t get upset or even question if I have to cancel plans at the last minute.  They ask in advance if I need to sit down, if I need different food, if they can help in any way.  These people make it all more manageable.  Thank you.

 

Then there are the strangers who just assume they understand.  They don’t get it.  On good days, I try to educate them.  On not-so-good days, I just ignore them.  I’d love to educate everyone, but some days, it’s just not worth it.

 

Hardest of all, there are co-workers, acquaintances, and new friends.  These are the folks like in the video above.  They honestly want to understand, they truly try, and most often, they miserably fail.  They equate my illnesses with their recent bout of flu, they think my pain is like the time they sprained an ankle, they assume my exhaustion can be cured as theirs can, by going to bed early for some extra sleep.  They don’t see why my health problems are so different from theirs, why I can’t just push through the symptoms.  It’s harder to educate them because they are close enough to really care, so they offer too many unhelpful suggestions.  It’s important to educate them because I will keep coming into contact with them over and over.

 

Over the years I’ve gotten better at explaining my symptoms and limitations, but I still haven’t found a way to truly convey it all.  If anyone has any suggestions, I’d love to hear them.  In the meantime, I’ll just keep trying to get my point across, a little bit at a time.

 

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Leave a Comment » | Educating, Expectations, Frustration, Insensitive, Isolation, Kindness, Limitations, Rants, Raves, Support, Thoughtfulness, Unpredictable | Permalink
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Planning for the unpredictable

September 10, 2011

The air is cool and clear, the sun is shining… it’s a gorgeous day here in Boston.  It’s a day to be outdoors!

So I guess I shouldn’t have been surprised when my friend called me up and asked if we could switch our plans from being indoors this afternoon to taking a walk around a pond.  It’s a great idea, actually.  I bet it’ll be beautiful, and I’ll love watching her little girls run and play.

I give a lot of credit to my friend.  She was very careful to make it clear that we could stay closer to home or do something else if I didn’t feel up to this.  She’s really great that way.  We’ve been friends a long time, and she “gets it.”  The problem is, I want to do this.  And I do feel up to it right now.  I just don’t know how I’ll feel afterwards.  I might be completely exhausted.  And I have plans to celebrate a friend’s birthday tonight, something I’ve been looking forward to for a long time.  So if I walk around the pond, will I be too tired later for anything else?  I won’t have much time to rest in between, unfortunately, because of how things time out.

I’ll just have to take a chance, and try to do both, and hope I don’t regret it later or tomorrow.  I hope this works out!  It would be so nice to be able to predict these things, but that’s just not possible.

 

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Leave a Comment » | Decisions, Expectations, Frustration, Limitations, Rants, Raves, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
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The dreaded look of genuine concern

September 3, 2011

I have found that there are three types of concerned looks.

First, there is the look of fake concern.  I’m sure you know what I’m talking about.  Someone doesn’t really care, but they try to look concerned because they know that’s the socially acceptable response.  I ignore those.

Next, there is the look of detached concern.  This is the one where someone really does feel bad for what I’m going through, and they want to sympathize, but they’re not close to me, so their concern is more general.  This is the concern you would feel for a stranger when you hear about something terrible they are dealing with.  The concern is real, but it’s not personal.

Finally, there’s the look of pure, honest concern.  This comes from a loved one who really cares.  Their concern is genuine.

It’s this last one that’s haunting me right now.  A friend recently asked me about my latest treatment.  I answered her with the truth, something I don’t tell many people.  She asked about other options if it doesn’t work.  Again, I told her the truth.  Now I can’t get the look on her face out of my head.  She was really concerned about me.  I wanted to reassure her that everything would be fine, but of course, I don’t know if it will be.  I love that she cares.  But that look just makes me feel bad.  I hate that I’m making people worry.  Of course, I’m not the one making them worry, it’s the illness that makes them worry.  It just doesn’t always feel that way.

She is one of my oldest friends.  We’ve known each other for 22 years.  (Wow, I guess I’m older than I thought.)  We did our elementary school science fair project together.  We’ve seen each other through divorce and dating and children and many jobs.  Of course we care about each other.  I just wish I could tell her I’ll be ok.

Leave a Comment » | Expectations, Isolation, Kindness, Pain, Rants, Raves, Support, Thoughtfulness | Permalink
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If only I could help

August 18, 2011

I participated in a great chat tonight on the Chronic Babe forum.  Overall, I really enjoyed it.  The one tough part was hearing about everyone’s problems and not being able to help at all.  Sure, I offered advice when I could, and lent an ear (well, eyes… it was online, afterall) but that just didn’t feel like enough.

Family and friends often say that they wish they could help me in some way.  I feel bad, because I know they just want to help, with the purest of intentions, and there’s very little they can do.  They are amazing people who do more than they can imagine by listening and lending support, but I do understand their desire to do something concrete and actionable.  That’s how I feel now.

I can’t do much to help these strangers online, but I do hope my random thoughts, advice, and encouragement did a little bit of good for someone, somewhere.

As for my family and friends, I try to be less stubborn from time to time and let them help me with so-called little things. It makes them feel better, and to be honest, getting help is a good thing for me, too.  A little help moving something, or help with and errand, can go a long way.  For you folks out there trying to help others, remember that those little things you do can add up to a lot of help for someone else.  Don’t underestimate the incredible effects of your actions or of your intentions.  They do a world of good.

Leave a Comment » | Frustration, Isolation, Limitations, Rants, Raves, Support, Thoughtfulness | Permalink
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