Monday, April 25, 2016

Inspiration or Idiocy?

A few words on the difference between being an inspiration and idiocy:

There’s a fine line between encouraging lifestyle changes and implying we aren’t trying hard enough to get better.

Some things people suggest aren’t even safe or possible because of the nature of the disease.

While meditation, yoga, foot soaks, essential oils, and whatever might seem like a great thing to suggest to someone with a chronic illness, it belittles our experience.

We probably prefer that you simply listen with empathy instead of trying to fix it.

Chances are good that we’ve either a)already tried it or b)it would make us worse. Explaining any of that makes us feel ungrateful and like we haven't been heard.

Just because we're not willing (or able) to drop hundreds of dollars on the latest health fad doesn’t mean that we don’t want to be cured.

Many people in my online support groups get angry and frustrated with friends or family who make these casual and earnest suggestions.

I prefer to think that the person saying those things has my best interests in mind.

I prefer to think that they are trying to help, but in a lazy way.

I prefer to think that they truly believe that what they are saying is well-intended. They just don’t realize that we aren’t idiots, and we live on the same planet - so yes, we’ve heard of it.

Not to mention, we have an entire health care team trying to make us better.

While I appreciate that you are trying to help, often the best help is to listen and acknowledge my experience and emotions.

from lenbrzozowski


  1. I think you make an important point although sometimes it might be hard to think that they mean well because what they are saying might sound impossible to do. I will always have aspergers, it won't go away no matter how many walks I take....
    I hope you have more positive and understanding people in your life that will take the time and properly listen^^

  2. Very well put. I know exactly what you mean. I have Epilepsy and my ex partner called it "The Mad Desease." We split up about 16 months ago But he tried to take my confidence away.
    Excellent post and a pleasure to read.

    1. Ugh. Super insensitive and rude of your ex! Hugs to you and thanks for sharing your experience.

  3. I'm guess many of these people have only your best interest at heart, but aren't sure how they can legit help, and giving all these various "cures" and "fixes" is all they know. Some certainly won't ever understand or accept.

    I fell into this pit trap with the ex I mentioned earlier (who suffers from BPD, at least diagnosed at the time), the wanting to help and being unable to accept that I couldn't fully. I didn't really offer any medical advice (in fact I'd usually have to explain there wasn't one magical quick fix pill as she'd change meds days after being put on them because they didn't "work" or whatever), but I think I gave/give sound day to day advice >.<

    Eventually I understood that my role would be to simply comfort and let the rest fall as it may really. People will also make their own decisions and there's nothing you can really do to stop that (aside from influencing maybe).

    Many people won't understand the hardships involved being they themselves haven't experienced it, but that doesn't mean that people can't empathize and be compassionate.

  4. I think you hit the nail when you say "unable to accept that I couldn't fully". That's a tough thing to accept for all of us, I think. I do think it's often meant well, and I agree that unless you've lived it or been close to someone who has, then it's difficult to grasp.


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