This past week I've connected with someone online who lives in my area. We're both enjoying the potential friendship that's forming, though it's too early to say for sure what will happen with that.
He doesn't know I'm sick.
...but that's not to say I've been concealing the fact.
We first began conversing about local places and events, and I just would casually say "I haven't been there" when there was no frickin' way due to CFS. We had a lot of banter and surprisingly informative discussion about the weather - turns out you can learn a lot about where a person has lived and what they enjoy doing based on their weather preferences and experiences.
I neglected to mention that the reason I like rainy and overcast days so much is because direct sunlight makes me sick.
But that's okay when you're just getting to know someone.
As our conversations deepened, we naturally reached the point of wanting to meet in person. I'm getting better at meeting people from online, I've safely done it a few times the past several months, so that part was okay by me. It was the illness stuff that concerned me - those people knew to expect someone wearing a gas mask who couldn't walk very far and whose brain might be a little foggy.
I took a deep breath. How do I navigate this? I realized I still had time, there's no reason to rush into explaining everything.
Because it's not a big deal. M.E. is not ME. It's just stuff I live around. Everyone has stuff they live around - my stuff is just a lot more suffocating than the general population's.
I'd already posted articles on the forum we're on about how I have a chronic pain condition and have serious medical issues that interfere with gaining weight. When we began discussing the logistics of meeting, I mentioned that I'm disabled, simply stating that it "complicates things on my end".
There was no big reveal, just a casual statement that oh, there's this thing that's making it a bit trickier to meet you. I took it in stride, and he did too. Because it hasn't got in the way of our connection yet, why should I expect it to? It's ME he's getting to know, not my illness.
Of course, wearing a gas mask can be a little off-putting. When I first began getting out again after so many years bedridden I initially made sure that everyone had fair warning before I came in. Nowadays? I usually don't bother in business settings. Occasionally the person behind the counter freaks out a little under the idea that I'm about to stage a hold-up, but when I behave normally it's never long before everyone around me does too.
Social interactions are a bit different.
I've tried the whole "full disclosure" route prior to meeting complete with picture, explanation, and everything, and people are often unable to handle the intensity. It's like jumping from a cold shower into a hot-tub....people need time to warm up to the idea before they can feel comfortable.
Here's my plan: to arrange a meeting in a place where I can probably take off my mask if the wind is favorable. Before meeting, I'd casually let it drop that I sometimes need to wear a respirator due to inhalant allergies. I'd have secretly scouted out the place beforehand and figured out where to park and how far I can walk, areas to sit down, etc so that I could conceal the mobility stuff initially. That is, until he suggests walking someplace and I have to mention that due to my disability I can't without the wheelchair.
I'll carry my mask with me, and may need to put it on a few times, but could probably keep it off for the most part unless we decided to go elsewhere. By then he would have had a chance to warm up to it and see that, y'know, it's really not me. it's just a contraption.
The selected place would have to be quiet, too, so I wouldn't need my headphones and earplugs. Another reason to scout it out beforehand.
Here's what I'm learning: There may never be the right time to have a big reveal about everything that's wrong with me and how sick I am. That's because the way society works is to get to know each other gradually. All of each other - the whole person. Likes and dislikes, past history, future dreams, current struggles and plans, it's all in there when getting to know someone and the depths of these subjects doesn't - and probably shouldn't - spill out all at once.
This illness is just a very small part of me; to focus our interaction on it now would inaccurately represent the rest of me. I may be concealing certain struggles I have, but that's just in order to share how I truly approach life. In this, I do not feel like I'm being deceptive. On the contrary - I feel like I'm being even more real because I'm helping others see past my disability, to see me through my own eyes, and to follow the example I'm setting for them to treat my illness the same way I do...or at least, the way I ideally long to.
So far, it's working. And I think that's really cool.
On NOT blurting out "I'm sick."
Blog entry posted by Dainty, Jun 2, 2014.
About the Author
Dainty became ill as a teenager and spent 7 years mostly bedridden from ME/CFS, life-threatening MCS reactions, extreme food allergies/sensitivities, cognitive impairment, fibromyalgia, episodes of temporary paralysis and various unexplained emergencies. The past couple years she has experienced profound improvement from various treatment approaches. She's now tackling independence and continues to pursue healing full time.