5 No Good Responses to Your Chronic Illness Diagnosis

5 No Good Responses to Your Chronic Illness Diagnosis

March 19, 2018 | Posted in: Chronic Life

How will people respond when we share the most intimate parts of ourselves with them? There’s simply no way to know for sure. It’s almost as though we’re standing in front of them completely nude awaiting our evaluation. And while, I don’t make a habit of standing in front of new acquaintances in the nude that is precisely how it has felt.

My husband and I recently relocated from Florida to Virgina for his job. We’ve begun the arduous process of building a new community of friends and connections. For me, this means navigating the muddied waters of deciding what to share when in terms of my health.

If I’m having an IVIG infusion administered at my home while one of my daughter’s neighborhood friends are over should I mention this to the child’s parent? I mean, I probably don’t want the child to go home wide-eyed, reporting “Avery’s Mom had a needle in her arm and was very sleepy.” Even if Avery’s Dad was home and quite capable, is it better to thwart any rumors I might be a junkie from the beginning?

Thus, I’ve stood butt-naked in front of a myriad of near-strangers over this short amount of time. I’m learning there’s something to this “rip the Band-Aid off” method. Most people respond in one of several ways, and over time their responses have little impact on me.

  1. The “it’s not a big deal, stop complaining about it response- This person just can’t figure out what all the fuss is about. So you have a rare disease or a cluster of autoimmune disorders, you can still go to work, right? Maybe your body is trying to destroy you from the inside out, but they don’t understand why you should get special treatment. If they don’t get to sleep or stay at home all day, neither should you. I mean, they feel tired and have aches sometimes, too. This person’s questions feel more like an interrogation. They talk down to you about your illness while you make a mental note to never bring it up to them again. They make it clear your illness is a lack of trying hard enough on your part. If they were sick like you, they would try harder.
  2. The “I’m going to fix all your problems with this eighty-dollar pill” response- This person assumes you lack the motivation to get better so you’ve never bothered to research potential supplements or possibly live under a rock where you’ve never heard of essential oils or probiotics. They refuse to take no for an answer. Only their “pure” brand can cure you. If you don’t buy it you don’t want to get better. They talk to you as if they are a doctor and you know nothing about your own illness. You make sure they have none of your contact information to send you sales pitches.
  3. The “it’s all in your head” response-This person feels confident in diagnosing you with mental illness, stress, or anxiety, not a medical illness, despite their lack of medical degree. They discount your symptoms, and know you’d feel better if you ate more kale or went for a run even though you’re in a wheelchair. In short, if you lived your life more like them, you’d be fine.
  4. The “my cousin’s uncle’s sister’s roommate had that” response- Inevitably, this person bought a moon rock from Amazon, or did a rain dance in Prague and they’re fine now. Get prepared for some major resistance to your medical plan, because you just need a moon rock!
  5. The “I’m not sure what to do with this information” response- This person is uncomfortable with your revelation and will now hide from you at every opportunity. They’ll offer platitudes and then run for cover. You make a mental note they can’t handle real life and make sure to keep it light from there on out.

The exception to all of these responses is the crown jewel of life, the person who genuinely cares, and the one who offers up a thoughtful insightful question in an effort to better understand. Maybe this person even makes a real offer to help. This person has seen you standing naked before them and stripped their clothes off in response. They’ve met you in your vulnerability.

Maybe we’re all kind of ugly standing there naked, but there’s something really beautiful about being met in our vulnerability, not judged, not fixed, and not hid from, but met.

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1 Comment

  1. Amy-Lynn
    March 21, 2018

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    Wow you’ve had some negative responses! I’ve also had some of those responses but, at least from family and friends, quickly found they were motivated by a pure desire to help moreso than by a desire to force you to by a moon rock or to make money off your lack of essential oil knowledge.

    I’ve found that there are VERY FEW people comfortable with the idea of chronic illness (and even moreso if it’s incurable or if it will kill you). I think they get scared. Scared of losing you – of losing the life and times they planned to share with you (even if you don’t die, your whole world is now different). Scared that it could happen to them (people just HATE being faced with their own mortality and vulnerability). In a lot of these cases they love you and want to help and that’s what they do to help. Even the people who think its all in your head – maybe they just hope it is so that it seems conquerable and it isn’t so scary anymore.

    This all being said, I’ve also struggled with these issues (i’ve even written my own blog post about why it took me so long to tell people which included some of these negative reactions). The worst ones I’ve faced are usually doctors or strangers – people who look at me like I must be a drama queen if I mention food allergies at a restaurant or if I’m walking with a cane or using a wheelchair at the mall.

    It’s frustrating. Sorry you’ve also had to go through that.

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