Truly *understanding* chronic illness

November 19, 2011

“Why are you taking a leave of absence from work?”

[stunned silence]

“The usual stuff, but it’s gotten worse.”

[confused silence]

___________________________________________

I am shocked at how many times I have had this conversation.  To be honest, even one time would be shocking, but I keep having it over and over again.  A few weeks ago I wrote this post about wearing masks so that people won’t see what I’m going through.  It’s something we all do, and we each do it in our own way.  For me, it means letting people know there’s a problem, but not letting them see how bad it really is.  That seems to be backfiring (as these things always do, even though I pretend they won’t.)

A few close family members and friends understand.  I let them see how bad it was, or they saw through my facades.  A few others understand because they’ve gone through similar things.  But most people just don’t get it.  They know I have some “issues” but figure they’re under control.  I seemed ok, except for occasionally having to cancel plans or not being able to drive too far in a day, and those are minor, right?  So why should I need to take time off from work?  I hate to spoil the illusion, but it’s time.

I keep seeing statistics about how many people live with chronic pain, how many have arthritis, how many have autoimmune diseases. These number make for catchy headlines and memorable soundbites, but where’s the education?  Maybe the problem is that we’re all wearing masks.  We need to make our family and friends understand our illnesses, so that they can make their people understand it, so that maybe society will start to get it.  The ignorance is so frustrating.  Yes, I wear masks, but even when I do show people what’s going on, a few weeks later I seem ok, and they forget all about it.  I need them, we all need them, to understand.

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter.  This blog is new, and it would be great to share it.

2 Comments | Educating, Expectations, Frustration, Isolation, Limitations, Rants, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

Searching for fairness in healthcare

November 17, 2011

Continuing yesterday’s theme of the screwed up health care system, I just read this article about special medical services to give second opinions.  They reevaluate diagnoses and treatments and make changes as needed.

Now, doctors make mistakes.  They are human.  It happens.  I think it is responsible of patients to get second opinions.  So you may be wondering why I think this is a problem.  Here’s why: this service isn’t available to everyone!  I just looked at the Best Doctors web site, since they’re located near me, and I saw that the service is offered only through employers!  This is like the FSA situation, where only some people have access to a fantastic benefit.

Back in the day it made sense to tie health benefits to employment, but is that still really the case?  For those of you living outside of the United States you probably think this is completely nuts.  You’re right!  I’m certainly not about to defend this system.  Why should I get better health insurance now because of where I work than I had the last 10 years (my entire independent working life)?  If I change jobs, why should my benefits change?  If I get a new job that pays more or less or is located someplace else, those aspects will affect my life.  That makes sense.  What doesn’t make sense is that the amount I pay for medical costs will change.  What doesn’t make sense is that I may have to get new doctors.  What doesn’t make sense is that my medication may not longer be covered by health insurance.

Congress failed.  Yes, untangling health insurance from employment would be a huge undertaking, but wouldn’t it be worth it?  Mandating that employers provide health insurance sounds good, until you realize that many will provide only the minimum, and that this doesn’t help the unemployed at all.  We need a system is that is fair for everyone.  We should accept nothing less.

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter.  This blog is new, and it would be great to share it.

Leave a Comment » | Educating, Expectations, Frustration, Limitations, Medication, Politics, Rants, Symptoms | Permalink
Posted by chronicrants

How broken is our health care system?

November 16, 2011

It is important for everyone to have doctors they feel comfortable with.  For those of us dealing with chronic conditions, it is especially important that we have a medical team we trust and who respects us.

Sometimes I think about leaving the Boston area (the climate here is horrible for me) and it saddens me to think about leaving my family and friends.  But then I think about having to get new doctors, and that terrifies me.  It took me many years to get doctors I like.  In the past year I have had to find a new PCP twice and that has been a horrible experience.  I can not imagine having to start over with a new rheumatologist, a new endocrinologist, etc.  Still, when/if I move, I know that I will have to build up a new medical team.  But that will be my choice, based on my actions.

What upsets me is being forced to change doctors!  To be clear, this is not happening to me personally, but it may be happening to a lot of people in my community soon, and that is very disturbing.

The current health care system is broken on many levels, in many ways.  I would like to say this is an isolated issue, but sadly, it’s not.  According to this article and other reports, a lot of people may have to find new doctors because of a breakdown of negotiations between an insurance company and a hospital.  Corporate negotiations will force people to get new doctors!  How horrible is that?  Now, to be fair, I’m sure patients will be more than welcome to stay with their current doctors if they pay for the costs themselves, but realistically, how many people can do that?

I’m not saying I have all the answers (though I certainly have a few suggestions), but I do know that the system needs to change so that when negotiations break down, patients aren’t the ones being harmed.  It is hard enough to be sick, then to find good doctors, and to negotiate the maze of insurance rules and medical terms and tests and procedures.  To then have that all taken away and be forced to start over, that is criminal.  The Blue Cross and Tufts Medical negotiators must work this out and they must do it now.  There is simply no excuse.

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter.  This blog is new, and it would be great to share it.

Leave a Comment » | Educating, Expectations, Frustration, Healthcare, Intrusions, Politics, Rants | Permalink
Posted by chronicrants

The community of a support group

November 11, 2011

After 20 years of symptoms, today I went to my first support group.

There are a lot of reasons I never went to a support group before today.  When I was a kid and the symptoms started, no one suggested it.  Later, I didn’t know where to look (this was in the olden days, before Google.)  After a while it was more that I was stubborn and scared.  I’m still not entirely sure what I was scared of.  I guess I was scared that I wouldn’t fit in.  So many support groups are for specific diseases, and I don’t have rheumatoid arthritis or lupus or multiple sclerosis.  What I have is similar, but not the same, and it doesn’t have a name, so I figured I wouldn’t be welcome at those meetings.

Earlier this week a friend forwarded me an email about a chronic pain support group just one town over.  The regular meetings are in the library, but this one was at an assisted living facility.  I pictured myself seated with 70- and 80-somethings who would think I didn’t belong.  And anyway, pain isn’t my worst symptom, so why bother?  I made excuses and had doubts up until the minute I arrived, but I pushed myself and went.  What I found was a group of warm, supportive people.  The guest speaker, a RN specializing in chronic pain management, was fantastic.  He clearly understood.  There was a teenage girl and a couple of elderly people, but most were in their 40s, 50s, and 60s.  Sure I was one of the youngest, but no one cared.  They welcomed me immediately as one of them.

I hope to keep going, even though they meet on Friday mornings.  I hope that when I go back to work in a few months it will be part time, and I’ll try to get Friday mornings off.  I can’t believe it, but I want to go back!

For a long time I didn’t understand the point of support groups.  I didn’t want to be around a bunch of people whining about their symptoms (that’s not what this was.)  I didn’t see how they could help, since they couldn’t get rid of the pain.  Now I understand.  The group won’t get rid of the pain, but it might help me find ways to reduce the pain.  And reducing the pain would give me more energy to deal with my more pressing symptoms.

But the biggest benefit of the group, the one I should have predicted from the start but never did, is the community.  For once, I was in a room of people who understood what I was going through, and I didn’t have to explain it to a single person.  I didn’t have to say a word.  Now that’s support.

 

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter so others know it’s not just them, that they’re not alone.

Leave a Comment » | Educating, Expectations, Kindness, Pain, Raves, Support, Symptoms | Permalink
Posted by chronicrants

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