Religion and/or/with/versus Chronic Illness

September 9, 2011

I don’t give much thought to religion and its relationship with chronic illness anymore.  I suppose I used to, but that was a long time ago.  In fact, I’m only thinking about it now because I got an email today that it’s the topic of this week’s Chronic Babe blog carnival.  It’s an important topic, though, and like with most other things, I have very definite opinions about it, so even though this is less of a rant or a rave and more of a reflection, here goes….

Like most Americans, I was raised in a household with religion.  In our case, we were not devout.  We attended services on the major holidays, celebrated with family and friends, and occasionally, but not consistently, celebrated some minor holidays.  I attended religious school for many, many years, so I knew a lot about how things were supposed to work.  I knew the prayers, the customs, and the bible stories.  The problem was, I started doubting from a  young age.  When I was three, I asked the teacher at my religious preschool, “If god made the universe, then who made god?”  I was told not to ask that question.  I was told that god just was.  Maybe that was the right answer for some three-year-olds, but it wasn’t the right answer for me.  That started me doubting, and the doubts never went away.

So that’s my pre-illness religious background.  When I was 12, I still went to religious school, still went to services, still celebrated holidays.  I also now had some mysterious pain.  At 12, I really didn’t think too much about some higher being giving me the pain, and I never considered praying for a higher being to take the pain away.  Having never believed that a god of some sort controlled the minutia of my life, such as my friendships or my grades or whether or not I got a particular birthday gift, this seemed no different than anything else.  I celebrated the holidays in a cultural way, and I thought about G-O-D, but I didn’t know what exactly I believed.  I was scared not to believe (some of those bible stories are scary!) but I didn’t have that “feeling” that so many adults talked about.  When I said to myself, “Please make the pain go away!” I wasn’t praying to any being in particular.  I was putting words to the hope that I felt that maybe, someday, things would get better.  Maybe that’s all prayer is?  I don’t know.

Everything changed in college, as it so often does.  I was living on my own for the first time.  I went to services more, actually, at the beginning, because I felt a connection to the people there, and it reminded me of home.  After I while, I realized that I wasn’t going for the services anymore, I was going only for the people and for the community.  Over the years, I gave it more thought, and finally admitted to myself that I just don’t believe in any higher being. My guess is that illness or no illness, I never would have.   To me, the monotheistic god, the Greek gods, the ancient Egyptian gods, and the Flying Spaghetti Monster all seemed equally unlikely to exist.  Still, the illness gave me an interesting perspective.

On the one hand, why would I want to believe in a being that would make me ill?  Or in one that wouldn’t make me better?  I’m a good person.  I help others.  I volunteer at nonprofits.  I go out of my way for strangers.  Why would I want to believe in a being that would do this to me?

On the other hand, I see religious and spiritual people who take great comfort in their beliefs.  I am incredibly jealous of them.  I want that.  Who wouldn’t want that?  Going through the fear, uncertainty, and difficulties of chronic illness, how nice it must be to have a proactive course of action (praying) at your fingertips all the time.  How wonderful to have a community of strangers ready to step up for you.  How nice to have hope.  Of course I want that!  I want that, but I can’t manufacture beliefs for the convenience of a support network and what I think of as false hope.

It seems to me that most people either become much more religious or much less so after a big diagnosis (or the diagnosis of a loved one.)  As far as I can tell, this happens for the reasons I just gave: either they can’t stand to believe in a being that would do this to them, or they need to believe in a being that can cure them.

The answer is different for everyone.  My path has led me to where I am now.  Maybe one day my beliefs will change.  Maybe they won’t.  I think the important thing is to feel comfortable with where I am now.  Thankfully, I do.  I get frustrated when others try to force their religion on me, but that has little to do with my health, and more to do with their desire for proselytizing.  We all believe in different things.  Thirty years after preschool, I don’t believe in god.  But I’m excited to celebrate the holidays with my family!

 

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2 Comments | Decisions, Expectations, Politics, Rants, Raves | Permalink
Posted by chronicrants

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
Posted by chronicrants

Why wouldn’t you use an FSA?

September 2, 2011

No, really, I’m asking, why on earth wouldn’t you use an FSA if you have access to one?  I don’t get it.  I love my FSA.

If you don’t know what I’m talking about, an FSA is a Flexible Spending Account, and this links to more info on it.  As a quick summary, it’s offered through some employers.  An employee puts aside a certain amount of money pre-tax.  This money can be spent on medical expenses.  Some offer a dependent care FSA, in which case the pre-tax dollars can be spent on dependent care.  There’s a catch, of course.  You decide at one point in the year how much money to set aside, and that gets taken out of each paycheck.  Whatever isn’t spent on medical needs/dependent care by the end of the year, you lose.  If you put aside $500 and you only spend $350, then you lose $150.  That’s a big catch, so you have to estimate very carefully.  But if you do have leftover at the end of the year, you can always use it to buy a new pair of glasses, or get an acupuncture treatment.  Still, you’re spending your money pre-tax, so that can add up to huge savings.

I started a new job last year, and it was the first time I had access to an FSA.  My main complaint about FSAs is that they are not offered to everyone.  I understand that the government depends on companies to handle the burden of managing these accounts, but it is incredibly unfair to offer this tax advantage to only a portion of the population.  Now, if you are lucky enough to be someone who does have access to an FSA, use it!

[Note: My other complaint is that the government added some crazy hurdles for nonprescription meds this year.  Now you need a doctor’s note to get reimbursed for cough drops or aspirin.  But that’s a rant for a different day.]

When I started my job last year, I asked co-workers about the process for getting reimbursements.  I was shocked by how many didn’t use it.  Yes, some people are healthy and don’t need it, but even if you’re on just one prescription, or need just one dental procedure, it’s worth it.  If you are reading this site, you likely spend more than that.  I use this money for medical visit copays, medical visit parking, prescriptions, vitamins, and random needs.  Last year I used it for physical therapy.  I use it for orthodics.  I used it to buy a new air conditioner this summer (because my health condition worsens in hot and humid weather, a/c is a medical necessity for me.)  I used it to buy new glasses, both distance and reading (yes, in my early 30s I need reading glasses.  I blame the many hours on the computer.)

So what does this mean?  I put aside $1000, and it looks like I could have put aside more.  I’ll remember that for next year.  But this year I put aside $1000, which means I’ll end up saving about $250 in taxes.  That’s huge!  That’s money that I’ve been spending every year, in addition to my health insurance premiums, and in addition to medical-type expenses that aren’t covered by the FSA (like the sneakers I buy because of my knee and back problems, but that aren’t technically a medical expense.)  What would you do with an extra $250?  Spend it on more medical stuff?  Save it?  Go to a fancy dinner?  Good, now go set up your FSA!

And if you don’t have access to an FSA, let’s brainstorm on how to get access to everyone.  It’s not right to offer this federal tax advantage to only some citizens.  It’s bad enough that health insurance is so often tied to your employer, but federal tax benefits shouldn’t be!  I know many healthy (and some not so healthy) people who think it is a waste of time to save receipts for an FSA.  For those of us who spend thousands and thousands of dollars every year on our healthcare, above and beyond premiums, those few minutes of effort can have huge payoffs.  Everyone deserves a shot at those payoffs.

Leave a Comment » | Educating, Job, Politics, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

How private is too private?

August 30, 2011

After 5 weeks of posting almost daily, suddenly there’s been silence.  Is it a coincidence that this happened when I moved to a new site?  Nope.

I was so excited for this move.  I immediately told two of the only people in my world who know that I write this blog, and asked them to share the link to the new site.  I should have been more specific, because one person shared the link with mutual friends who would of course figure out that I am the author.  One figured it out immediately and emailed me.  I was so upset, I was ready to shut down the site on the spot.  Luckily, a friend gave me some good advice, and I waited.

Now, I know I was a bit overly emotional from the Prednisone and Plaquenil and the resulting lack of sleep – who wouldn’t be?  Still, it went deeper than that.  I felt so exposed.  How would you feel if someone posted a naked picture of you up at work?  I might be ok with that, but I couldn’t handle this.  This was much more personal.  So I’ve been wondering, why is privacy so important to me?  And how private is too private?  What’s not private enough?

I’m always shaking my head at the fools who post very inappropriate things on the web for all to see, then are surprised when it reflects negatively on them.  If your personal web site has pictures of you drinking with friends and flipping a car, then sure, you might have trouble getting a job.  But this site isn’t like that.  This site is a place for me to vent my frustrations, and for others to find the comfort of seeing that others have similar experiences.  This site is constructive, not destructive.  Still, what I write is very personal, which is why I chose to set it up anonymously.

I always knew someone might figure out my identity at some point, but I didn’t expect it to happen to soon.  I’m starting to get used to the idea of these few people knowing, but I still can’t write under my own name.  My friends and family know about my illnesses, of course, and know many of my symptoms, but I keep a lot of the real, deep fears to myself.  We all have things we keep private.  I know I’m more private than most.  But am I too private?

I suppose there’s no real answer to this question.  I have to tell myself it’s ok to not know.  But I still wish I did.

Leave a Comment » | Decisions, Frustration, Isolation, Rants, Raves, Support | Permalink
Posted by chronicrants

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