I recently caught myself doing something terrible … in my brain. My default answer to invitations for social events, whether intimate or large, has become “no.” I have fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, osteoarthritis, degenerative disc disease, and OK you get the picture. So “going out” poses many problems for me. I might get super tired, and even have dizzy spells. I might have a grotesquely bloated belly and have zero options in my closet for feeling cute. There could be sitting involved, or loud noises, which can be agonizing.
But this “no” default goes against everything I believe in and everything I teach as an advocate for empowerment. We are creative people. We have work-arounds, and we’re good at using them: earplugs, lumbar pillows, giant hoodies in colors that make our eyes “pop.”
I need to stop saying “no.”
Now, sometimes I must say “no.” Sometimes I’m in a terrible flare and I can’t make it out. And if this is the case, please accept my answer and don’t continue to beg me to leave my bed where I’m enjoying a soothing furniture-hug. That only makes me feel worse.
However, you are now officially allowed to ask me if it’s a *real* no, or if it’s my *default* no. I promise to be honest if you promise to believe me.
I’m going to work really hard on getting “yes” back as my default answer, and here are a few ways you can help me and others with chronic illnesses or mental health conditions to confidently say “yes” a whole lot more…
- Invite us to something earlier in the day, because we get tired at night. A matinee or a lawn concert would be better than a late show at a bar. Or some people might do better in the evening, so ask our preference.
- Let us come early and help set up your party and have one-on-one time, and forgive us when we leave early because it’s loud, we’re tired, and the number of people is making us drained and anxious.
- Give us a chance and a place to step away for a few minutes. Social situations can be really hard, and a little walk outside can work wonders to help some of us reset.
- Learn to talk Splat with us, and have a Plan B and a Plan C in place in case we’ve got a heavy Splatus.
- Check in on us. We love to pretend to be “abled” and can pretend a little too hard sometimes, to our own detriment. An occasional, “Are you doing OK?” gives us a comfortable moment to ask for help or ask for a change (and yep, we need to make sure we do our part and ask!). Knowing how to talk Splat can make this super easy.
- Provide as much information as possible. If there’s food, what will it be? Is physical activity involved, and what would that be? How long is it? Are there going to be breaks, and when? Is the place accessible? Is there anything in the content or the environment that could trigger us (triggers could be sensory or subject matter)? Will there be any animals there (this could be good – therapeutic, or bad – allergies!)? How many people will be there? The more we know, the more we can come prepared to have a great time.
- Bathrooms! They are a must for many of us, for a variety of reasons. Please don’t expect us to go on long car rides with no breaks, and avoid jaunting some place that has no facilities.
If you’re still reading this, you’re already doing the most important thing right. You’ve recognized that things are different – often more difficult – for us and you are actively listening to ways you can help. Fear not; you don’t have to be perfect. We can feel your compassion and good intentions. You’re a Splatvocate, and we can’t thank you enough for your support.