I’ll Keep the Invisibility of My Illness, Thank You.

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I'm Alissa!

I help women who have also been diagnosed with Multiple Sclerosis make specific and personalized diet, lifestyle & subconscious changes so that they can begin to heal their body, reduce disease symptoms, and return to a life they love.

hey there,

The obvious thing about having an invisible illness is that it is invisible. No one can see it, no one knows what is going on with you or how you feel. No one knows if you are having a good day or bad day just by looking at you, usually. No one knows if you are in pain or if you are numb. Unless you tell them, of course. I’ve discovered something interesting about having an invisible illness. It isn’t always a bad thing.
I’ve been on crutches for the past 4 weeks due to having hip surgery. I had impingement and a torn labrum that needed fixing, which I finally was able to take care of. The thing I have discovered with having crutches is that EVERYONE is asking me:
“So, what did you do to yourself?”
I imagine this is similar to being pregnant. Everyone always asks with joy ‘When are you due?!?’ and it seems almost culturally appropriate to ask. And if the inquisitor is bold enough, there will be follow up questions, about knowing the sex, having a name, even feeling prepared. It seems like just something we ask in our culture, and if the mother declines to answer, SHE is the rude one.
I now understand, somewhat, of what she is going through. Obviously I’m no where near the physical or emotional realm of what she is feeling, but I do understand the blatant disregard for boundaries that many STRANGERS often have. This has left me in a predicament on many occasions and unsure of how to handle myself. I’m somewhat of a private person, but an open one as well (a quandary, I know). So lately, when people have been asking, I’ve been sharing that I had surgery not too long ago and leaving it at that.
Part of me feels that if I stated “I’d prefer not to answer” I’d be saying that just to say it. But another part of me wants everyone to just back off already! But I know that being snarky to one, will certainly not stop the droves of people being inquisitive. That is why I am at a loss. And why I have discovered a new found sense of thankfulness for the invisibility of my illness. I know that others may not get it, or may not know what is going on, but I think I would rather it this way. Now that I have seen it from the other side, from the constant barrage of questions and strangers intruding into my medical file, I don’t think I would want to wear my pain on my arms, or my numbness on my legs. I prefer to let people in as I CHOOSE to, and make those decisions for myself, on my own terms.
What are your thoughts? Have you ever been on the other side like this and have had strangers asking many questions about something medical going on with you? Do you think this would be a good/bad thing if others could see our illness?
Leave a comment and let me know, I’m really curious to hear your story!

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  1. Shelley says:

    I totally agree. I can choose who and if to tell and usually it’s no. Luckily I’m a master at disguising my symptoms. I know some people love drama and attention but I’m not one of them.

    • LissMS says:

      Very true! I was JUST talking to my husband about the drama and attention need a few minutes ago too, and how that often plays out on social media.

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