Today's post from letsfeelbetter.com (see link below) is a general post about coming out to friends and family about any illness you may have. It's full of great advice about how not to overdo it. People with neuropathy often have the urge to explain what's wrong with them in microscopic detail because they either want the listener to fully understand that this is not a normal condition, or they're afraid nobody's going to believe them. It's human, it's natural but it's going to stretch your friends and family's patience to the limit. No one is saying that you don't need to offload, or explain the peculiarities of neuropathy - of course you do but you need to pace yourself and give the information in small doses that the listener can digest, think about and work out how to best support you. It's hard - the natural urge is to sit them down and splurt until you feel you've got the message over but you've got to watch for the 'glassy eyes' and 'uh-huh' repetition, or else you'll lose them for good.
Definitely worth a read.
As Seen in IG Living Magazine
By Ilana Jacqueline February 5th 2014
IN MY MIND, I have a secret identity. When I meet new people, I try to stay cool and act normal. But, underneath my dress and cardigan, there lies a ridiculously good-looking body — wrapped up in a Holter monitor and a hospital gown.
When getting to know new people in your life, it’s important to remember not to take off your dress and cardigan at the dinner table — even if you do feel antsy about getting your secret identity as a patient off your chest. Breaking the news about chronic illness is a delicate process — one that takes thought, precision and almost no partial nudity. Check out these five rules for the big reveal:
1. Reveal that you deal with an illness on a need-to-know basis. Don’t slap a classified tag on the summary of your medical woes. But, understand, that telling some people in your life about the tumultuous issues related to your chronic illness won’t benefit you.
Before revealing your situation, ask yourself: ”Is the topic of my disease bound to come up between us eventually?” “Do I have any obvious signs of this disease that they might start to build their own (and possibly incorrect) assumptions about?” “Will this person be affected by how this disease affects me?”Last, ask your- self: “Do they care?” You don’t need a pat on the back and someone to call you their personal hero every time you say “I have a chronic illness.” But, if someone in your life has already expressed some kind of prejudice against someone with disabilities or seems to otherwise be incredibly tactless, it might just be better to let that person figure it out (or not) on his or her own.
2. Prepare an elevator speech. Close your eyes, and imagine that nobody wants to sit and listen to you drone on about your aches and pains for an hour. Now, open your eyes. Surprise! That’s the truth! Between surgeries, symptoms, medications and flare-ups, chronic illness can seem like it’s hungrily taking over 98 percent of your life. By going on and on about it, you’re effectively handing over that remaining 2 percent of non- disease-related moments. If you have to talk about the disease, do it in the form of an elevator pitch, or a short summary used to quickly define a situation. By memorizing and reciting this speech, you’ll help minimize the impact of your troubles, while helping to educate new people. Having a speech defining the disease can also help you personally separate your disease from your personality. Once the elevator pitch is over, you can get off on the right floor and start talking about who you really are.
3. Don’t overshare. You don’t need to reveal the details of your sensitive stomach, the current color of your snot or your barely-healed laparoscopy scars. All of these nice stories may have your listener internally screaming “Waaaayyyy too much information!” Save it for your friends in med school who are no longer shocked by any function of the human body.
4. Be the reaction you want to have. People are going to follow your lead when it comes to the state of your disease. If you’re frustrated about it, they’re frustrated about it. You’re sad about it, they’re sad about it. But, if you’re cool about it, they’ll be cool about it. If you haven’t come to terms with your condition yet and are still in a phase of mourning your old life, you may not be ready to reveal your experiences (and open yourself up to the judgment of others) just yet. You’ve got to love yourself — with or without the disease — if you’re going to expect someone new in your life to do the same.
5. Make it common knowledge. Most adult conversations don’t cover the topics of why the sky is blue or the grass is green. It’s just common knowledge (or, we don’t care.) What’s easier than having to explain to everyone you know now, have known or will ever get to know that you have a chronic illness? Having the Internet do it! Don’t be “that guy” who twitters about his medications all day long, but mentioning here and there on your social network how you’re fighting, managing or coping with your disease can help break the ice when you see old friends in person, and it can help lower the shock factor with new acquaintances.
ILANA JACQUELINE is a 23-year-old dysautonomia and primary immune defi- ciency disease patient from South Florida. She’s been writing professionally since 2004 on everything from health and wellness to celebrities and beauty. Her blog www.lets feelbetter.com is both a personal collection of anecdotes about life with chronic illness, as well as a resource for patients of all ages.
40 February-March 2014 www.IGLiving.com
http://letsfeelbetter.com/five-rules-for-revealing-your-chronic-illness-as-seen-in-ig-living-magazine/
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