"Here are seven things 'everybody knows' about my illness that just aren't true.

Not long ago I started this thread about asthma and got a fair number of enlightenng responses. In light of Broomstick’s post, I’d like to open up the floor for Dopers to vent about whatever condition they may suffer from that friends, family, co-workers, and other acquaintances are irritatingly clueless about. Tell us the things “everybody knows” about diabetes, bipolar disorder, high blood pressure, allergies, asthma–whatever you want–that just aren’t true. Seven, of course, is an arbitrary figure.

I’ll start with my experiences as a sufferer of type-2 (non-insulin dependant) diabetes. These are all comments I’ve actually heard.

Aaaannnnnnddddd I hit reply too soon.

Here’s the rest:

  1. You’re diabetic because you’re only allowed so much sugar during your lifetime and you ate too much candy when you were little.
    Utterly untrue. There is NOT a specific allotmen of sugar we’re all allowed, and my having a sweet tooth in my pre-teen years did not come back and bite me at 25.

  2. Your blood sugar went low during church. You’re not managing it properly!
    Occasional lows are virtually inevitable. I exercise, take my medicine, and check my blood sugar 4-6 times a day, but type-2 diabetes means, at base, that my pancreas isn’t working properly and/or my cells aren’t processing insulin properly. The effect of exercise, glyburide, and caloric intake isn’t always consistent, which is why I check my blood sugar so much. On the Sunday in question I was at 130 at 9:00 and at 90 at 11:30, later, so I left the room to eat something. That doesn’t mean I’m not managing it properly; it means I’m doing it RIGHT.

  3. You can put honey in your coffee or tea instead of sugar, and it won’t affect your blood glucose.
    Yes, it will.

  4. You check your sugar too much–you’re going to get an infection!
    In my little diabetes kit I carry with me at all times, I have alcohol swabs. I use those every time I check my blood sugar, and I don’t reuse lancets. Hence the lack of infections.

  5. Pray to God you never go on insulin–my aunt had to, and two years later she lost her leg/went blind/died of complications.
    Dollars to donuts your aunt wasn’t regulating her blood sugar. INSULIN doesn’t make you lose a limb or your site, and it damn sure doesn’t send your blood sugar up. But if you don’t check your blood sugar regularly and/or don’t take your medicine & insulin when you need to, then your chances of all those things happening skyrockets.

  6. You can cure your diabetes with cinnamon & other herbs!
    This one’s only mostly bullshit. There’s some evidence that cinnamon can help the body use insulin more efficiently, which is helpful if your problem is insulin RESISTANCE (say if the only medication you need is Avandia or something similar) but doesn’t do jack if your pancreas flat doesn’t make any insulin in the first place.

  7. You’ll be cured if you just have faith in Jesus!
    Then why don’t amputees who have faith in Jesus regrow their limbs?

Next?

I don’t have 7.

I have vitiligo.

  1. No, it is not contagious.

  2. No, it is not related to impetigo/cancer/psiriasis(sp?).

  3. No, it is not “ok” that I am fair skinned and hence, the areas don’t show “as much”.

  4. No, I am not albino.

  5. No, fake tan doesn’t work well to cover up the splotches.

  6. No, it won’t “go away”.

  7. No, I don’t know Michael Jackson.

I have vitiligo (depigmentation) involving the backs of my hands.

  1. It is not contagious.
  2. I have heard every Michael Jackson joke already.
  3. One in ten people in the world will have the disease at some point in their lives.
  4. Jesus is to busy with the diabetics to worry about vitiligo.:wink:
  5. Treatment is largely inneffective. (see #4)
  6. Sunscreen is used to prevent burning. Without melanin, sun exposure = burn.
  7. Yes, even that Michael Jackson joke.

Holy crap!! Yo eleanorigby!!

:smiley:

Also a diabetic. One my wife doesn’t get:

Sugar-free does not mean carbohydrate-free. “Hey, I bought some ice cream you can eat!” “Cool. How many carbs per 1/2 cup serving? Oh, 45 grams. So, a bowlful of ice cream is about the same as three entire meals’ worth of starches. Yeah, buy me lots of that.”

I hesitate to write this, because I don’t want to offend anyone (I’m not trying to belittle Type 2 diabetes) - but as a Type 1 diabetic it frusterates me when people tell me they can empathize because they have a friend with Type 2 diabetes. First, I don’t know much about type 2 - so please don’t ask me for advice for your friend. I do know in many cases it’s treatable with pills, and properly treated (and maybe with a little luck) it’s nearly curable. That alone is a huge distinction from Type 1, and makes me wish the two diseases had different names.

Anyhow, not sure why I got all riled up - I haven’t had one of those conversations in a while. I rarely bring it up anymore unless I have to explain why I’m carrying around one or more syringes…

Fabulous Creature - I’ve heard the “cinnamon and other herbs” thing before - as well as a “curable by eating bee pollen”. By my uncle no less. Not sure where he came up with that one…

Hmm, not really a list of 7 so far. I’ll try to clean this up a bit:

  1. Similar to Type 2:
    Similar, yes. Also worlds apart.

  2. Treatable other than with insulin (bee pollen??):
    No - treatable by insulin, and I won’t be your guinea pig to try a new herbalistic treatment.

  3. You ate too much sugar:
    No - cause of type 1 is undetermined - maybe genetic, maybe environmental.

  4. Not being able to eat sugar doesn’t bother you - you never developed a taste for sweets:
    True, I was diagnosed early, but I still have a sweet tooth. Can’t tell you where it came from.

  5. You can use it as an excuse for doing weird things:
    When my blood sugar gets low, it’s akin to being drunk. Ability to make decisions takes a walk, and I become incoherent - but it’s neither fun nor in my control.
    Scratch that last bit - it’s in my control to not let my blood sugar drop too low, but after that, not so much.

Five’ll have to do - it’s lunchtime. :slight_smile:
–KidScruffy

I’m not sure I’d call it CURABLE. It certainly seems easier to manage, at least in the short term, than type-1. On the other hand, some persons whose initial diagnose is Type-2 (i.e., non-insulin dependent) eventually find themselves unable to control their blood sugar by any other means than insulin injection. Type-2s might be divided into two categories: those whose cells have become insulin-resistant but whose pancreases are still producing that hormone; and those whose pancreases are compromised so that they do not produce enough insulin. The former category can frequently be treated by drugs like Avandia, which reduce insulin-resistance (and thus are unlikely to cause you to go low); the latter take drugs like glyburide, which stimulate the pancreas to work harder. But there’s some evidence that such drugs won’t work indefinitely; a lot of Type-2s eventually become Type-1s. (I try to avoid the glyburide, actually, and am currently down to half a pill a day.)

KidScruffy, here’s an research study I found on PubMed on the issue. Unfortunately it doesn’t hold forth hope for persons with type-1 diabetes, and to my (layman’s) eye seems to indicate that cinnamon may reduce insulin resistance; in other words, those type-2s whose pancreases are compromised are likely to see little benefit from cinnamon.

This is the one that really pisses me off. I suppose the 4-year-old kid in my diabetes education class just INHALED sugar in the brief period of her life before she was diagnosed.

I rather suspect a sweet tooth is genetic.

re: The cinnamon/ T2 Diabetes thingy.

I’ve found that if I have too much cinnamon at once, I crash. HARD. You wouldn’t like me when I crash. It’s definitely doing something for me.

My social anxiety and generalized anxiety aren’t “real illnesses”- they’re made up by drug companies, or are my lame excuse for having a weak character.

Everybody knows what it’s like to have social anxiety, because everybody has gotten nervous before speaking in public or something like that. Just like everybody knows what it’s like to have asthma because everyone’s gotten winded once or twice, or everybody knows what it’s like to have diabetes because they’ve been really hungry or been sleepy from eating too much. Oh, and everybody knows what it’s like to have depression, because everybody’s been sad before, right?

My anxiety and depression would go away if I just exercised, ate the right diet, “thought positive thoughts,” or whatever.

My needle phobia will eventually be cured by some dumbass telling me in graphic detail about an experience he or she had with needles.

My illness is kind of uncommon, so I haven’t heard too many of these, but an otherwise intelligent friend did say something quite stunning when he found out I had an ileostomy. He believed ileostomy bags were nowadays kept on the inside of the body and that I had to go to the hospital to get it emptied.

I haven’t actually asked him if he thought I had to go to the hospital three times a day or if he thought the internal bag was gigantic.

Tack on “go to [a Fundamentalist] church [with a minister who has a GED and don’t need no egghead classes in Greek at a seminary cause he’s got the spirit]” and I’ve gotten that one a lot as well. They don’t seem to understand that you’d be a depressed Holyroller (and actually a report a few years ago listed Pentecostal churches as the denomination with the most depression sufferers [probably because they started going there hoping the vibrance would help their depression]). It’s also hard to explain (even to one doctor, I’m afraid) that an ER visit a couple of years ago brought about by a panic attack really and truly felt like a heart attack- I was unable to breathe and the machines showed my heart rate was only slightly elevated [from hyperventilating] and my oxygen saturated rate was 99%. My mind, however, was essentially telling my body “don’t listen to the machines, you’re having chest pains and breathing problems” and it wasn’t due to willpower or just being “nervous” (I’m not a “nervous” person in my day to day life) but it was indistinguishable from the symptoms of a heart attack.

I recently learned I had narcolepsy. I haven’t had any real prejudice for it but a lot of misunderstanding, and I was exactly the same way before my diagnosis so I’ll mention this here. I assumed and most people assume that narcoleptics are people like the Argentine in Moulin Rouge or River Phoenix’s character in My Own Private Idaho- they’ll be ordering a Big Mac and suddenly hit the floor sound asleep. That actually IS a type of narcolepsy, but it’s very rare, very severe and usually diagnosed early on (it’s not hard to diagnose somebody who falls asleep on a basketball court while playing the game)- specifically it’s called narcoleptic cataplexy. My type, the more common, is less severe and consequently usually goes undiagnosed for many years if ever.
I always just assumed I was a lazy sleepyhead who didn’t have the willpower to get out of bed in the morning like other people do. I was always late to work or anything else that happened in the morning. I was up to four alarm clocks in my bedroom and a cell phone with an alarm and could still oversleep, and if I had anything remotely important that I HAD to be at by 8:00 am or whatever I had to arrange “don’t stop ringing until I answer you in person” wake-up calls. On weekends or off-days I could and would sleep 14 hours and wake up tired. This is narcolepsy, a condition that is marked by hypersomnolence, disturbances in REM patterns (most people go into REM sleep after an hour or two, I go into it within minutes, but the result is the opposite of what it would sound- it’s restless rather than restful sleep). After a couple of medications (including bloody expensive Provigil) had a moderate but not really sizable effect I started taking amphetamines (Adderall) two months ago, had it doubled after the first month, and the effect is just astounding. I won’t say miracle drug, but I can get up earlier and stay up longer and am not exhausted all the time, etc…
(Speaking of, I got majorly pissed at a recent article in the school paper on Adderall abuse- the students who take it illegally without a scrip or the ones who fake the symptoms of ADD to get a prescription, etc., and the number of whining students who insist that they can’t function without it because college is so demanding. Bitches please! College workloads have been going down for decades while amphetamine abuse has been steadily rising- how do you think your parents managed in the 70s? You’re the reasons I have to pick my script up in person once a month and show photo ID and sign three forms whenever I get it filled.)

Really? Are you type 1 or 2?

I’ve also heard “had a more fulfilling job”, “got a hobby”, “had more friends”, “joined a club”, or “had a more positive attitude toward sex” touted as things that would make anxiety and depression go away. :rolleyes:

“Depressed?! What the hell have you got to be depressed about?” This makes as much sense as asking, “What do you have to be near-sighted about?”

“Get a grip on yourself, lad. Nobody has to be depressed.” Oh, yeah, I should think myself out of depression, or maybe if I were tougher, I wouldn’t be depressed.

“Asthma is mostly emotional, just a psychosomatic reaction to stress.” No, it’s not.

“You don’t need sunglasses, just squint.” The iris of my right eye doesn’t work right, and bright sunlight hurts like Hell, even with my eyelid closed. Yes, I do need sunglasses.

Apparently I don’t have the willpower to just *snap out * of depression and anxiety. :rolleyes:

Aren’t they the same thing?

d&r :stuck_out_tongue:

Type 2, controlled through diet with (mostly) daily testing (I tested a lot at first, now I just test to get a feel for how I’m doing, which is well enough that my doctor was impressed).

I’ve found that more than a teaspoon a day crashes me, as does having that dosage in one sitting. I don’t know what it’s doing, but it’s doing something. Maybe this weekend I’ll try to set up a graph to figure out exactly how much of an effect it has on me.

By the way, good call on the alcohol swabs. I do reuse my lancets ('cause I’m cheap and they aren’t), and to tell the truth, I hadn’t even thought of making sure the lancet’s sterile. :smack:

What’s wrong with your right eye? For the past few weeks, my eyes have been very sensitive to natural light (as a result of being very slow to adapt to increased light levels, I think), to the point where unless it’s very cloudy, I need to wear sunglasses outside. If it’s only a little cloudy or not cloudy at all, I can keep my eyes open for up to 12 seconds, at best. After that, I start blinking rapidly and soon can’t open my eyes at all.

I’m glad you posted again, because I suspected a whoosh and was pissed! Hey there and well met, fellow sufferer(?). There are like 7 different kinds (or maybe 14-I dont’ remember) of this lovely disease.

I didn’t know about the 1 in 10, though.

If those of us who have mental illnesses get treatment for them, we will lose our personalities and any creative abilities we have.