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?


  1. Thanks for this, Rachel. I could see myself in so much of this.

    My own situation is probably more stable than yours (which is something I really value - it gives a certain degree of predictability and of familiarity).

    You may be interested in something I wrote a couple of years ago about my process of becoming used to living with chronic illness. It's here:

    That incomprehension/disbelief from medical people is such a disabler, too. I'm currently waiting for an assessment for eligibility for help with personal care (stuff my husband usually does but that he won't be able to do for about 6 weeks from late September while he recovers from back surgery) and I'm super-nervous that I'll be turned down because CFS won't be something they recognise. I gather that's really common. Fortunately we have a really supportive community and I'm in the process of asking 7 women (most from church and all who live within a couple of streets of us) to each help one evening per week for as long as it's necessary. So I have a good backup plan if the official system doesn't come through, but it shouldn't be like that - they shouldn't choose who they help based on who has a comprehensible illness!!

    --Heather :-)

    1. Thanks Heather! In some ways I'm thankful for the changes that kids have brought. It pushed me to make some changes that possibly I could have made earlier but wasn't sure of trying. On the other hand, there have been costs and I sometimes worry that there will be a moment when my body says "enough!" I just have to try to take one day at a time.

      I could say so much more about medical care and benefits - it's enough for another post! I hope your application is accepted. I went through some bureaucracy a few years ago and it was stressful. It is hard emotionally when we have to prove that we are suffering.

    2. I think it's neat you decided to have kids, hard though that obviously is. Martin and I have decided that that's not an option for us. We'd dearly love to, but we just can't see how. I don't have the strength to safely hold a baby (let alone pick up a toddler) and loud noises, stress and unpredictability makes me very ill, so all the childcare would have to fall on Martin. Even if he gave up work we can't see how to make that happen. At the moment he only works a 30 hour week so he has time to care for me, too, and caring for children is hardly a 30 hour a week job! If I happened to get pregnant we'd have to work something out, but it's not something it feels responsible to do deliberately.

      About invisible illnesses, I was thinking that my issues with the health system aren't really that I have an invisible illness so much as that I have an unrecognised one.

      My mum has an invisible illness. She had polio as a kid, and the main way she was impacted is that she only has 1/3 of normal lung capacity due to paralysed chest muscles. She also has quite a twist to her spine (which is surprisingly invisible - she's able to disguise it sufficiently by the way she dresses that most people aren't aware of it) which means that lots of her internal organs are in unusual locations and subject to unusual stresses. But her invisible condition is responded to quite differently by the medical fraternity from mine. Medical people always believe in her issue but, because they're quite unusual, they don't always know how to work around them. She literally nearly died when she had a hysterectomy: the surgeon pressed hard with the scalpel where they thought there would be lots to cut through, but her unusual anatomy meant that there was nothing there, so they cut deeply where they shouldn't have and caused a major hemorage for which they were quite unprepared :-( So she doesn't need to deal with disbelief, but she does need to ask lots of questions and make sure people have thought through issues they've likely never encountered before whenever she goes through medical stuff.

      With the general public my mum and I have pretty similar issues with incomprehension of an invisible condition, though.

      --Heather :-)

    3. I'm very thankful that it has worked out for us to have kids. I was unsure that it would happen at all for a long time. If my symptoms had been more severe it wouldn't have been possible.

      I can understand what you're saying about incomprehensible illnesses. For a long time my biggest issue was an extreme sensitivity to chemicals. This is a condition that is even less understood by mainstream medicine than CFS/ME. I was often afraid to even mention it when I went to the doctor. Now that those symptoms have reduced I find that I don't talk or write about them much. I sometimes think I should because people who are experiencing them are severely isolated and often do not have a voice. Talking about CFS just seems like something more people can relate to.

      I have found that sometimes when I can look more "normal" it becomes more important for me to remind myself that I do have extra challenges and need to take that into consideration.