Recently we had Invisible Awareness Week (September 26-October 2) and now we have Invisible Disabilities Awareness Week (October 16-22). While these are (probably) technically different issues, the fact that “what you see is not what you get” is getting some attention is a win for any of us who have them. I’m going to refer to invisible illnesses throughout this post.
Having an invisible illness a full-time job. Lots of other spoonies recognise this constant juggling of daily/weekly/monthly (hourly) things, while others on the outside don’t.
We know that invisible illnesses require…
- and maybe making some sacrifices (or changes) in order to be as healthy as possible.
It is hard for those without invisible illnesses to see how hard we work:
For starters, we are (probably) really productive and on top of things. That’s because we have to be. To handle a chronic and invi
sible illness (like lupus), we eventually become well-versed in our illness and what needs to be done to manage it. We’re professionals. Professionals in researching, planning, managing and handling these and other “regular” things like household duties, children (furry or not) and on and on. So yes, we juggle a lot.
We do such a good job of being productive and juggling that others forget we have an illness (heck, sometimes WE forget!). I mean, how many of us have to keep track of:
- medical bills
- side effects
…for each illness (I have three: lupus, sjögrens and raynauds)?
We downplay the pain or effect our disease has on us. Part of it is that our pain is different from ‘regular people’pain. Our pain level of “3” may be a “9” to the regular folk. We may say we’re feeling good, but that could still mean we’re not well…but perhaps better than we have been in the past. We just suck it up and move on (if we can). This phenomenon was highlighted in a recent article showing that patients with lupus downplay the effect lupus has on their lives.
We don’t want to be a burden. Most of the time we can do things in our own. But when our illness begins to rear its ugly head, we are sometimes reluctant to ask for help, or feel badly for having to cancel plans.
So, happy invisible ‘something’ awareness week. If you have one, perhaps this is a good opportunity to share your thoughts and experiences with close friends or family you trust and who might not quite understand what you’re going through.