Just so you know

All right. I have ideas. I think about stuff. So here is the spot for stuff I'm thinking about and want to be able to share more broadly and possibly promote. Like I have time for this.

Everything is provisional at this point and subject to change in the future - as far as the blog is concerned. In real life some things will remain unchanged.

Also, our children are not really named Lenny and Linus. We are not that cool.

Feel free to share, rant, disagree, but please remember that I'm an actual person who tries to be respectful. I'd love it if you are and do to.

Monday, September 8, 2014

What I Wish I'd Known about Invisible Illness

photo credit: marfis75 via photopin cc

Apparently it's "Invisible Illness Awareness Week."  I think that might be a little ironic.  But I'm too tired to say for sure.  Anyway, I've already written a few times about having chronic illness, but I was thinking today about what I wish I'd known when I first got sick about a decade ago.  Maybe it will help someone else who is just starting on a similar journey.  So here you go:

  1. Not knowing is the worst part.  There are so many unknowns.  Most people start out not knowing what's wrong.  If you're lucky you get a diagnosis that has a treatment protocol and a prognosis.  Or, like me, maybe you get an "exclusionary diagnosis," which means "we ruled all this other stuff out and don't really know what's going on, so we'll call it Chronic Fatigue Syndrome which not only sounds really wimpy but is also something we don't know what to do about."  If you end up with an honest doctor they will actually tell you this.  If you find a compassionate and creative one they may try to help you find ways to deal with the symptoms.  Or not.  
  2. Finding good medical care is important, but can be challenging.  Just about everyone I know with chronic illnesses has at least one story of traumatic experience with the medical system.  "Medically unexplained" illnesses are kind of an insult to the medical system.  Some doctors specialize in them, but they tend to have a few pet diagnoses and treatment plans.  Other doctors view patients who have been to numerous doctors and had many test with suspicion (I've actually been turned away as a patient by a general practitioner's office.)  Having access to quality medical care is something that we need more than every, though, and it's worth working to find it.  Even if there aren't answers for the chronic problems everyone gets acute illnesses from time to time.  I read somewhere that good medical care is a key indicator of quality of life for people with chronic illnesses.  It seems obvious, but...
  3. Life turns upside down, but that doesn't mean I'm crazy.  It feels crazy.  A simple virus leads to mind-numbing, soul sapping fatigue that never, ever goes away.  Tasks that used to be taken for granted become next to impossible.  It's easy to get extremely depressed.  The depression is not the illness, but it compounds some of the symptoms.  Getting psychiatric help doesn't mean admitting that it's "all in your head."
  4. Which reminds me, sometimes people will say things that are hurtful.  Most of the time they don't mean to.  The situation is as upside down to them as it is to the person who is sick.  Plus, our society values activity and competence and independence and lots of other energetic characteristics that most people with chronic illness no longer have.  So trying to rationalize, minimize or solve the situation is kind of a reflex.  But that doesn't make it less painful.  It can be very important to....
  5. Find a supportive community.  Thank goodness for the internet.  Chances are you can find a group of people with exactly the same thyroid condition or digestive issues or asthma or....  It doesn't take the place of relationships with people you can touch and smile at, but it can be a huge relief.  Venting is awesome. 
  6. Planning can be a lifesaver.  Or impossible.  My motto is cliche:  Hope for the best, plan for the worst.  But sometimes making plans is useless because bodies just don't cooperate.  Other times, it's impossible to predict how a course of action will end up and you just have to take a leap.  That's how it was with us and having kids.  It's full of unknowns for everyone, but with chronic illness that's doubly or triply true.
  7. Sometimes the situation improves.  Even though I knew people who'd improved and heard stories of others I never really believed that my health would improve significantly.  I'm not sure if hoping that it would would have made my situation better or worse.  Some people believe that believing you can be healthy is essential, but I have seen improvements that started when I never really believed they would happen.
  8. Even with improvement you will never be exactly the same.  I probably shouldn't say never.  Maybe some people can suffer from a prolonged illness and, on recovering, become exactly the person they were before.  But I think it's probably very rare.  Illness is isolating.  Pain changes the way our brains function.  Losing control makes us think about what we really value in life.  Plus, improvement doesn't necessarily mean "cure."
  9. The "new normal" keeps changing.  Sometimes people get into good routines and are pretty stable.  But in my experience, especially since having kids, change is the one constant.   Remember all those unknowns I started with?  They never really go away.
  10. Kids need to eat every day.  Wait.  That's the wrong blog post.  Gotta fix supper now.
If you've been dealing with chronic illness for a while what have you learned?