Explaining Chronic Invisible Illness/Is It Worth It?


A friend in one of my Facebook chronic pain groups posted this question for discussion: "What would you like to say to those who don't think our pain isn't that bad and/or we are faking our illness?"

I couldn't answer right away. I didn't know what to say and wanted to chew on it for awhile. Quite frankly, I've grown wearing of trying to make others understand. What do you say when you've been through the ringer with doctor after doctor insinuating you are a hypochondriac until they finally find evidence on an imaging study that proves otherwise? I can tell you what my inner two year old would like to say (you can find that here). But what, if anything, can be said that would truly help them understand what we, the chronically ill, face every day? 

What to say to friends and family that roll their eyes and think you are "lazy" because you are unable to get out of bed until 9am. That just because you had decent sleep the night before, it is no guarantee you will be feeling well enough to do anything the next day. Or, maybe that extra sleep did afford you a few hours to get some things done, or go out and visit a friend, etc. That doesn't mean you'll be able to do it the next day, and if you over-did it when you were feeling good, the price to pay is your ass being grounded with pain and fatigue for days. How can we explain clearly and effectively that no matter how well we are taking care of ourselves, we really don't know what we are going to feel like on a daily basis. These flipping chronic invisible illnesses have minds of their own, and it's just as frustrating to us when we have to cancel plans, or that our lives lack consistency. 

I couldn't think of a damned thing. I kept coming back to the truism that there is no way they can ever understand unless they themselves have been through it, so banging my head against a brick wall to do so is futile. It's important to remember too, so we can forgive those for their ignorance and not take what they say or do personally (much harder forgiving the doctors though...I'm working on it). 

Then again, you never know what is going to reach somebody. Those times when you take a chance, reach out, or answer a question in a new way, and you finally see a glimmer of understanding in their eyes. You know something has shifted and you have helped someone move toward as good of an understanding as they can get about your illness. That feels pretty good. 

Look at all the good Christine Miserandino's spoon theory has done. 

When I woke up this morning I found the above picture on my FB wall. That's my answer, I thought. It's practical and to the point. In the rare event that someone asks what having this illness is like I say:
1) Imagine feeling like you're coming down with the flu every. single. day.
2) Pushing through my pain today means I'll usually be in bed sicker tomorrow. 

Example: Yesterday afternoon I was finally feeling well enough to clean my house. But I cleaned for 3 hours. Today I'm in bed, and it's taking all the energy I have to take my son to school and back. And I wanted to run an errand today. Nope, spent too many spoons yesterday. 

So yeah, I can see the value in trying to help others understand, and I love fighting stigma. I want to also focus on the other side of the coin, which is learning to take the slings and arrows of others with grace.  To realize and remind myself that they don't mean to be mean. They are just living their lives and doing the best they can like all of us. I never want resentment to take hold. “Holding on to anger is like grasping a hot coal with the intent ofthrowing it at someone else; you are the one who gets burned.” ~Buddha
Working on being gentle, kind, and accepting of my limitations, and those of others, is taking a lot of my spoons right now. 

~Jen XO

PS. I may be down but I'm not out. Stigma... yah I'm talking to you. I'm coming for yo' ass.