Why We Don't Talk about It

1.  People who suffer with chronic pain or chronic illness have worked so hard to embrace our new normal, that we truly believe we are "good" on the days that we are only partially disabled.  This is not a bad thing, but we forget sometimes that there are people who genuinely want to know the details of how we are doing.

-Our best day is probably never symptom free and is still somewhat disabling, if not significantly disabling.  We want to maintain a good attitude about that. We want to see it as a day for which to be thankful. These are the days we will tell you we are good because we truly see them as good days. 

-If we say we are  having a "bad day", it generally means that the symptoms are so bad that we cannot get out of bed.

-"I'm okay" or "Not my worst day, not my best day" means I am on a lot of meds and still have some of my symptoms as well as side effects of the meds but am able to do some of the things I want to do."

-If we reach out and ask for support, it has probably been days if not weeks and sometimes months of being so disabled that basic things are not getting done, things like laundry, the bills being sent out, grocery shopping, cooking, dishes, and sometimes even showering.  

2.  Yes, we have had the experience that many people flat out do not want to know how we are doing.  They change the subject, tell us it will get better, stop calling, etc. This is not the reason we do not talk about it though.  We learned a long time ago not to dwell on this because we do not have the physical energy to be bitter.  We also understand that the level of suffering we experience scares some people. They do not want to think that life could be that hard.

3.  We do not want to overwhelm our loved ones.  If someone hurts when you hurt, how do you possibly explain that you are never symptom free.  How do you explain that your best day is not even half as filled as that of your healthy peers.  How do you explain that the sound of running water gives you debilitating vertigo or that the feeling of water on your skin in the shower feels like electric shock? We do not want our loved ones to grieve over these things, so we open up about them less than one per cent of the time. It isn't being a martyr.  It's trying to normalize our lives and feel like we contribute in our relationships.

4.  We want accommodations but not pity. We will ask for help if we need it, and it is okay to offer, but do not be offended if we say no.  We are trying to maintain as much independence as possible.