With nearly half the population* living with an invisible illness, there is every reason to give the person fighting for the last empty spot on the bus the benefit of the doubt, even if she is in her twenties. But we rarely do. If you “look good” you must certainly “feel good.” Right?
The mom who never participates in school functions may not be lazy, she may be grateful that she is at home rather than in the hospital again this week.
The grandmother who is unable to bounce her new baby grandson on her knee isn’t lacking in joy about being a grandma; she just doesn’t trust her strength and balance.
The dad across the street who asks for a ride down to the hardware store may not be asking because his car is broken down for a third time this month (like he claims), but rather because an invisible medical condition has caused him to temporarily lose his driver’s license.
These are just a few reasons bloggers are taking to the internet September 8 and blogging about invisible illness issues throughout the week to help spread awareness.
Whether your family is impacted by autism, mental illness, depression, eating disorders, the beginning stages of Parkinson’s Disease, one of the many autoimmune diseases, or even severe chronic pain, the invisibility factor can cause the emotions of living with an illness even harder to cope with than the actual medical condition.
As shown in recent Dear Abby letters, family and friends often think those with invisible illnesses are hypochondriacs or trying to get attention. Rarely is someone given the benefit of the doubt that they could feel much worse than they look.
How can you explain something no one else can see? How can your pain be that bad if you can still walk around the grocery store and push a heavy cart? Why are people quick to judge that you “can’t be that bad” if you arrived at the party in a wheelchair and are dancing by the end of the night? (As may be the case with a condition like Multiple Sclerosis).
Join National Invisible Chronic Illness Awareness Week’s campaign to educate others on living with invisible illness by blogging about it September 8-12, 2008. You can also download a badge for your site at www.invisibleillnessblog.com and post a comment about your own blog and the topic.
They are also featuring a “virtual conference” with twenty online workshops with some of the biggest names in chronic illness experts and bloggers at Blog Talk Radio at www.invisibleillnessconference.com .
Lisa Copen, initiator of National Invisible Chronic Illness Awareness Week says, “We hope people will be enthusiastic to care enough to erase the myths surrounding invisible illness. Together we can make an impact through our stories.”
*Chronic Care in America, 133 million Americans live with a chronic condition; US Census Bureau show about 96% of illnesses are invisible and no assistive device is utilized.
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Is “Dear Abby” Confused About Invisible Illness? Why Not Give People the Benefit of the Doubt Sometimes?
Oh, Abby! We need to talk. Two posts in one week that have to do with illness… and your responses were less than, well, I hate to say it, but educated. We don’t know if these women are really ill, but give them a little bit of the benefit of the doubt, could you?
My assistant recently brought these 2 “Dear Abby” letters to my attention — and Abby’s response. Needless to say, it made me a bit sad. We thought we would post our own comments and get some feedback from you!
Sometimes we wonder why our friends and family don’t understand. Is there any doubt when this is the kind of thing they read in their daily paper? They hear people spout off using words like, “psychosomatic quirks,” “textbook hypochondriac (who denies it, of course,”) “her hypochondria is so irritating,” “she lives to be sick. She is always in the emergency room for something.”
Abby’s responses aren’t much better: “she may have a complex emotional disorder rather than a physical illness,” “stop enabling her,” “every time you see her, tell her she looks TERRIBLE; you’ve never seen her look worse. It’s what she’s ‘dying’ to hear, and she’ll love you for it!”
Read my comments below the articles… and then WRITE DEAR ABBY about what it’s like to daily live with hearing “but you look so good” or “the stares you get from parking in a handicapped spot.”
And do me a favor? Mention National Invisible Chronic Illness Awareness Week… because everyone just needs to be a bit more AWARE… even Abby.
DEAR ABBY: How do you deal with a hypochondriac? My brothers and I lost our dear mother to cancer
when we were in our teens. Daddy has recently been diagnosed with a pernicious form of melanoma, which has a low survival rate.Our father has been married to his second wife, “Doris,” for 20 years. Doris is a textbook hypochondriac. She denies it, of course, and insists that her health is bad. So bad, in fact, that she didn’t see the irony of telling my sister-in-law, who was undergoing chemotherapy for lymphoma, that “no one understands what it’s like to live with a chronic condition.” Doris was referring to her allergies!
Now Daddy is battling cancer. He and Doris came to visit his three children and multiple grandchildren. Doris talked about her head cold the entire visit, and our time with Daddy was cut short because she needed to be driven back to the hotel. (No one else could detect her symptoms.) I’m sure Doris loves my father, and after 20 years of marriage, they’re certainly used to each other.
But now that Daddy is facing death, I’m having trouble supporting Doris’ emotional needs because her hypochondria is so irritating. Still, Dad wouldn’t want us to abandon his second wife, despite her psychosomatic quirks. What do you suggest? — NEEDS HELP UP NORTH
DEAR NEEDS HELP:
You can try talking Doris out of her hypochondria until you’re blue in the face, but it will only make her try harder to convince you that she’s sick — so stop trying. Instead, every time you see her, tell her she looks TERRIBLE; you’ve never seen her look worse. It’s what she’s “dying” to hear, and she’ll love you for it!
>>> OUR COMMENTS
Okay, so maybe it wasn’t the best ettiquette to tell someone going through chemo that “no one understands what it’s like to live with a chronic condition” when referring to her allergies. And there are people who really want it to be “all about them” regardless of what othes are going through. But if you’ve ever had chronic allergy problems, it can impact your life a great deal. And her feeling like “no one understands” doesn’t mean that she is a hypocondriac!
Just because no one else could “detect her symptoms” doesn’t mean it didn’t feel like her head was about to burst. Or maybe, just maybe… she thought her husband was getting too tired being around the entire family and 3 grandchildren, and instead of embarrassing him and his failing health, she used her own allergies as an excuse to get out of there so he could rest.
Either way, she is suffering and feeling alone. And having her spouse facing death, may make her feel even more alone and scared. It may even be making her allergies worse (crying a bit more perhaps?)
Plus, let’s face it, it’s true… for those of us who deal with chronic conditions daily and have to learn to cope with the pain, and pushing through every hour of the day, frankly, it can be a bit disheartening to see people who are coping with cancer have an outpouring of sympathy and practical help. It’s not that we don’t want them to receive it… we just kind of selfishly wish someone would be sympathetic to us now and then, or maybe just bring over dinner.
Abby’s response to just “tell her she looks terrible” may in fact help validate this woman’s feelings. But it’s not because she is making up her chronic condition and wants attention. She just needs some validation that she is hurting too. Abby, your sarcasm isn’t real classy!
Kara, my assistant, made some good points too. “‘Allergies’ could be much more severe than people realize if they’re allergic to enough things, like multiple chemical sensitivity. On the one claiming to have cancer, having people from church cleaning her house and yet planning an active vacation, it could be active for her family while she sits on the sidelines.”
DEAR ABBY: I’m afraid my best friend’s daughter, “Kami,” may have Munchausen syndrome. People with this condition consciously fake the symptoms of a physical disorder.
Kami is 30, a former nurse, and married with a toddler. She lives to be sick. She is always in the emergency room for something. Kami often claims she has cancer and is dying. In fact, she recently told me proudly that she had “died” twice. Ladies from her church clean her house and bring her meals because they think she’s at death’s door, yet Kami and her husband are planning a water-skiing and snorkeling vacation.
Kami’s husband and parents are extremely protective of her and become defensive if anyone suggests that Kami may not really be physically ill. A sister-in-law who mentioned Munchausen is no longer spoken to.
The final straw for me came when she arrived late to a wedding, making the grand entrance in a wheelchair, and by the end of the night was on her feet swing dancing at the reception. She’s losing friends, because to be friends with Kami means you are completely invested in her illness. Most people are staying away. She exhausts us. I care for this young woman and her family, but don’t know how to help her. Have you any thoughts? — WORRIED FRIEND IN UTAH
DEAR WORRIED FRIEND:
Until Kami’s family is ready to recognize that she may have a complex emotional disorder rather than a physical illness and stop enabling her, there will be no help for her. However, has anyone taken into consideration the effect Kami’s endless dramatic crises are having on that toddler? When a parent is continually at death’s door, attention that should be devoted to nurturing the child is diverted from where it should be.
So, we’re assuming that it’s believed that someone couldn’t arrive at an event in a wheelchair and later be on their feet dancing? Ever heard of rheumatoid arthritis? Multiple sclerosis? Any number of illnesses that are impacted minute by minute?
The fact that “Kami’s husband and parents are extremely protective of her and become defensive if anyone suggests that Kami may not really be physically ill…” may in fact be because she is physically ill! Perhaps they don’t want to share about her illness with the worldright now. Or maybe she doesn’t even have a specific diagnosis yet and the family doesn’t want to be questioned about it all the time.
The fact that the people who are closest to her and see her on a daily basis are protecting her gives her physical challenges some credibility with me. And Munchausen syndrome, though it does exist, is one of those things you see on Dateline and then everyone starts assuming they are a witness to it.
And what about that vacation? Abby’s response that the kids should be thought about too. We go visit family and go out in the boat, but I haven’t waterskiied in 15 years! Sometimes I can’t even ride in the boat, because I can’t get in or out, or it’s too bumpy on my joints. Perhaps, despite this woman’s illness, she is pushing all her energies into giving her family a vacation of their dreams (while she sits on a lawn chair and watches) is one way she is showing them her own illness won’t slow them down. I do it all the time.
We can’t really win, huh? If you’re “ill” you should “stay home” but then also deal with the guilt of not giving your kids all the experiences they should have. If you plan a vacation so your kids can have some fun, then you “can’t really be that ill.” How many of us have sat on a bench while our family ran around an amusement park? Have you rented a scooter and tried to pace yourself? Have you tried to grab a nap while the kids went to the pool.
Our last trip to Disneyland my mom and I shared a wheelchair. By 3 p.m. she ended up at the ER to get some fluids because with her diabetes she had gotten dehydrated. By 5 she was back at the parade where we saved her a spot. “Vacations” are not your typical vacation when you are healthy vs. ill, but it doesn’t mean we shouldn’t be allowed to take them without letting people think we aren’t really ill after all.
Kara, who was a nurse before my assistant, and has MS, also says, “You can ‘die’ in the ER and be brought back because you have a severe allergic reaction, like to ingredients at some foods at restaurants (I know someone who has coded multiple times due to this.) As for coming to the wedding in a wheelchair and then later dancing… when you have an illness that severely limits your energy–that can be the reason for a wheelchair. You can either be “saving your energy” for dancing or actually feel better later unpredictably–MS is very much like that. Most people are aware that if someone is in a wheelchair at times and then not at other times, especially on the same day They can totally misinterpret that.
Got a response? We’d love to hear your comments below!