How do people react to your illness?

[Kate51]

Mary Kay, you are a true bona-fide spirit lifter. When did you know your were adopted? This is kinda funny, I am watching Dr. G (medical examiner)
She is my favorite program. Anyway, we all have some bones in the closet, I guess, and sometimes you just have to get a few years on you before you realize things aren't as bad as you think or as good as you want, but just keep growing. I still feel like a 16 year old chronologically, though. Very afraid, till I get ticked off, then I tend to handle things a little more intelligently instead of emotionally, maybe a bit impersonal. Just got a call tonight, my ex-mother-in-law fell in the nursing home, 87 yrs old, she has advanced Parkinson's. Her femur is broken. I suspect it broke and made her fall. But she's still an angel to me, and my girls' Grandmother, so we are still very close. We just buried Grampa in April, he was 94 yrs. Such a sad time, don't know what the outcome will be, but she's in a lot of pain for right now. She has RA also, knees, hands, fingers and feet worst of all. She's the one who keeps me grounded with my finger problems....just keep going!

 

[Kate51]

I'm missing seeing Kate around, what's she up to??

 

[Starlight]

Just before I got my diagnosis but when it was strongly suspected I had MS, and even for a short while after the diagnosis, I'd get a lot of "exercise and a good diet will help". Used to drive me bonkers. Other "classics" are:

- But you look so well (that's because some of my symptoms are "invisible")
- Have you tried this wonder herbal drug? It's a cure. (yeah, right, in which case we'd all be cured of MS by now!)
- You're looking better today! (no I'm not, I just feel cheerier today)

I posted this link elsewhere before but it's applied better here as it deals with comments made by the "well". An Open Letter To Those Without Invisible Disability Or Chronic Illness. There are versions on the site for various conditions such as arthritis, CFS and so on.

I've lost friends because I'm often too tired to see them, so they don't bother calling anymore. That's taking it to the other extreme.

When trying to get a diagnosis, I even had one neurologist say to me that it was anxiety and that my tremors were only due to anxiety. I told him he'd be anxious too if he felt like I did! Another one asked me if I thought my emotions were affecting me... sigh.

My family were also disbelieving of my even being ill at all. Even after I got my diagnosis. My late mother denied it totally and would tell my friends that I'm a hypochondriac and seeking attention. My sister (who hates me anyway) would go around telling people it's all an act. She still tells people that to this day. Needless to say, we don't speak to each other anymore!

I had a hysterectomy too - I'm so glad I don't have to walk down "that aisle" in supermarkets anymore!!! It's been bliss ever since!

 

[Kilroy2.0]

I have what is called Cluster Headaches. Which is a really ****ty name for what I have because the only thing these have in common with a headache are the fact that they are in the head.

It is actually a malformation of the Hypothalamus part of the brain. The best way to describe them to imagine someone driving a hot poker through your eye for about an hour at a time 8-10 time a 24 hour period. People how have these are ether episodic or chronic. If you are episodic you will have several of these a day for 1-6 months at a time. If you are chronic you put up with this **** all year long, I am Chronic. Pain killers make the pain worse. I am on several meds and take Oxygen with a very special mask to control these.

So things I hate to hear from people:
Can't you just take some Excedrin and lay down?
Oh I had one of those once?
You must have a very low pain tolerance, its just a headache?
If you quit smoking you would not have those?
You are just pretending so you don't have to ______.

I had these for several years (12) before I meet my husband in a support group for these. Finally someone who understands

-g

 

[seminolewind]

Usually unwanted sympathy, which is why I hardly ever tell anyone... Most of my friends know about my spinal issues (it's hard to miss, since I walk around like an old man most of the time). Very few know about the hemochromatosis. Strange as it may sound... with all the stuff I have going on, I don't consider my diabetes to be one of my more serious issues. It impacts me the least. Maybe only a few know about my depression and anxiety issues. I can fake happiness and joviality pretty good.

I;ve been faking happiness and joviality for many years around those who don't understand. It tends to make more problems than not. It leads to alot of mis-interpretations, and disbelief about your illness. But not from me!

 

[seminolewind]

Starlight, I "love" the one about the herbals that people suggest. Esp when they suggest SAM-E. What a joke.

My mother has been seeing a counselor (laugh) who almost got my mom to stop taking her antidepressants and get on sam-e. Luckily we talked her out of it. Then she tried to get my mother on some vita-juice. That was another we talked her out of. Then she used to give my mother those quack books by Sandra (?) somebody.

 

[planetofthevapes]

Ok, I hope people here understand more than anybody else.

After the birth of my first child I developed a chronic hive condition known as dermatographia. If you look it up you will most likely just see a bunch of people writing on their skin and enjoying it. But there are a good number of people who have it that are in hell, I am one of those. For weeks I woke up having scratched my skin raw wondering what in the heck had happened. I went to cocky doctors who said that they would give me 2 weeks of steroids and all would go back to normal, only to return weeks later WORSE OFF. Literally it kept me from sleeping and from enjoying anything. The itch is unlike any other itch ever. So finally I found antihistamines...and take lots of them, which after 3 1/2 years still seems to keep me quite drowsy. A doc finally listened to me, grabs a medical book, runs in and asks "is this what it looks like" and when I replied yes, he said you'll have to live with it, it could disappear tomorrow or 30 years from now, we know nothing about it and have no way to treat except antihistamines. Well, as it progresses I become immune to all of the antihistamines and get progressively worse. What I have come to find out is I'm not the only one who gets constant recurrent bouts of nausea/gut issues/forgetfulness (to the point that I can't remember that I just spoke with somebody on the phone for an hour and I call them back)...ok, now I'm gonna cry.

Ok, but here is what bothers me the most. It's hard to live with itching and even just pain from anything (including water) touching my skin. But the worst part is, people will call me and claim that they have a rash (i mean red skin is a rash right? and of course, it only lasted an hour or whatever). So they will either blame me for giving them a rash and avoid me or they will say I got rid of it by using oatmeal or something (they think I haven't tried it all, I can be cured by something like oatmeal...OMG). It's all in their head...it's not contagious. And then people say, OMG, you scratched your neck (and of course, I didn't, it just touched my shirt and swelled up). And every time my husband gets bit by a mosquito or something, he thinks that I do have something catchable even after all of these years. And hearing people tell me to stop taking the meds so I don't hurt my liver and because my body is only itching because I haven't become "addicted." Other people tell me just to stop itching, i won't break out like that. It's BS. People think it's all in my head or that it's an addiction or just a ploy for attention. Nobody, not even my husband understand. sometimes, and this is gonna sound stupid, but sometimes the itching is so bad that I don't know if I can go on any more. I just wish somebody understood. So, anyways, I keep looking for help to find the reason behind it, but 95% of cases are ideopathic, they can't find why it happens and they can't stop it. It'll leave one day as mysteriously as it came. I've got 3 1/2 years down and I hope every day that I wake and feel better. Oh, and what irks me is research on the internet says that 5% of the populations has/have had this condition...but here's the kick, most of them only have it for a day-week (and it's usually because of an illness like strep throat or an infection of sorts) where the body just attacked itself to get better. Most of those 5% don't even know they had it and it's gone... I wish I was one of those guys!

Just to explain how this works, if anything touches me, that spot breaks out in hives that will wheal together. Some cool instances of this happening is at first my husband had his hand on my leg (and I had jeans on, his hand was ABOVE the jeans) while we were watching a movie, an hour later I got up and got ready for bed to find a perfect, I am talking perfect, handprint. I should have taken pictures and used the pics to bribe him...don't piss me off or I'll tell people you beat me (nah, I'm just kidding, I wouldn't do that). I have been avoiding public eyebrow waxing, expecting the worst, I got it done a few months ago...my worst fears were even worse than I expected. I swelled up immediately so bad that I looked like a red-faced racoon. It lasted for literally hours and burned so bad. I drove straight home after that (which was 2 hours away and I had not finished in town yet). Of course, if I am full of antihistamines I can have a bit of a laugh I suppose. I had an allergy test done (which is just crazy with this condition) and even though it itched so bad and I was literally just one huge welt I did find it amusing when a nurse walked in to ask the other nurse a question. She literally almost fainted. She stuttered and stammered and made some wierd comments and then walked up to me and said "omg, you are the most 'reactive' person that I have ever seen, you're allergic to everything, omg" and she walked out the door stunned. It was funny to see her face (despite how bad it felt on my skin)...and of course I'm not really allergic to everything, allergy tests lie when everything makes you get hives. Ok, I'm done with my rant now. If you want to see another person who has this condition (but the non-itchy version) please look up "ariana page russell" She has this, but does not suffer at all, which is misleading to the public of course, but still looks pretty cool. If I didn't itch, I would also draw on myself! LOL!

 

[seminolewind]

I had a best friend for 23 years. Thru thick and thin. When I was dx with depression and anxiety, I could tell she didn't believe me. She wouldn't really accept the excuses I made for not doing something she suggested at times. For me, our friendship wasn't the same. Two years later, she would be very angry for me not getting together as much. It finally ended. I feel really bad about it, but it was during a time where I was hard pressed to do anything outside of home or work, it was too overwhelming. It's too sad still now, and it's been 4 years since then.

 

[seminolewind]

Planetofthevapes, I hear you. It's a sad thing, and I hope it goes away for you. I'm sure you've tried everything including coal tar. Just like some people don't understand chronic vs acute, they don't even understand that you saw doctors and they couldn't do anything because docs cure everything and save all lives.

Are there things that exaserbate your condition, like stress or worry or weather?

 

[bigeyes]

So things I hate to hear from people:
Can't you just take some Excedrin and lay down?
Oh I had one of those once?
You must have a very low pain tolerance, its just a headache?
If you quit smoking you would not have those?
You are just pretending so you don't have to ______.


-g

OMG, that's infuriating, isn't it? I get those horrible puking migraines, and I just love it when someone gives me the old 'it's just a headache' line.

Seriously? You try going about a normal day when you're hugging the toilet with dry heaves and giving serious thought to shooting yourself because it's the only thing that will make your head stop hurting.

I really wish stupidity was painful.

 

[planetofthevapes]

Planetofthevapes, I hear you. It's a sad thing, and I hope it goes away for you. I'm sure you've tried everything including coal tar. Just like some people don't understand chronic vs acute, they don't even understand that you saw doctors and they couldn't do anything because docs cure everything and save all lives.

Are there things that exaserbate your condition, like stress or worry or weather?

Seminole...wouldn't you know it that coal tar is helpful when the going gets rough. Of course, the best kind is denorex (the put cooling ingedients in it and it really feel very nice) but I cant get it around here, I can only get the wal-mart brand coal tar, it doesn't foam very well and is hard to get good coverage. My husband doesn't like the smell and sincit alone isn't all that effective, I only useit on really bad days. Actually nothing in itself setsit off, more like everything does, even water. Its wors in stressful situations, but it's always there and it's usually pretty bad, night is the worst mostly because my meds wear off about then.

I can't imagine how horrible those cluster head aches must feel! I wouldn't be able to cope. A tiny 5 minute headache will send me to bed...so those really piercing ones...oh I just can't even imagine! Hope they find something to help (I can't recall who said hey have those and my comp is being a pain, the keyboard is going out and my internet connection is the pits in this room). Hell, I just wish we could all be cured of our ailments. Do you ever sit back and wonder "why me?". I'm not saying I'm a great person, but I have a pretty big heart and I try to get along with everybody...and I can thinkof at least 10 other people that deserve an ailment such as ours more than we do! Though if I had to personally go and hand the ailment over, of course I wouldn't!

-Sue

 

[seminolewind]

Planet, LOL, I remember an old friend of mine who had psoriosis, and used coal tar when it was real bad, I guess I said that because on reading your post, I thought of you. You would think that they could come up with something for you.

 

[planetofthevapes]

Planet, LOL, I remember an old friend of mine who had psoriosis, and used coal tar when it was real bad, I guess I said that because on reading your post, I thought of you. You would think that they could come up with something for you.

Well, even though nothing is really known about it, i have noticed more info in the last month or so just pop up. They are kinda starting to think about maybe possibly coming to a conclusion of it being autoimmune. If they ever decide on that, it would be great. There have been a few docs out there that have given immunosuppresants with great results. However, I have only read about that happening maybe twice. I would hope that when the year renews and we are willing to start searching for answers again (because we will start at the BEGINNING of the year with our $3000 deductible, so that we don't pay that all out in vain just for a new year to start)...maybe I can find a doc that will give me some. I know they are dangerous, but I gotta tell ya, I'm willing to take that risk. I fantasize that I could take them for a couple of months then wean off and reboot my immune system...like a computer. I know that is probably impossible, but hey, we all dream right?

 

[taz3cat]

Marykay, i know how mad these doctor can make a person. You can even tell them what is wrong with you and they will ignore you until your almost dead. I have met a few nurses just like the one you did.

I get situational diabetes when I am real sick. they gave me a medication for diabetes that made me crave sugar, now can that be helpful to a person. I have never craved sugar in my live. I have aways liked salty foods best. I am still getting over the sugar craving but the diabetes is gone.

Marykay, I hope you have found a doctor that is helping you now.

Bigeyes, You don't have to look sick to be sick.

I don't drink, and I read one report by one doctor that I was a heavy drinker.

Planet, the doctors act like predisone is worse that illigal drugs. Methotraxtate is worse.

 

[Mary Kay]

My Dr. and I are butting heads right now. I want HRT and she doesn't want to give it to me. I will go to the street corner and get my fix if I have to!
But other then that all is well. Thanks

 

[bigeyes]

Bigeyes, You don't have to look sick to be sick.

I don't drink, and I read one report by one doctor that I was a heavy drinker.

Don't I know it.

I had one doctor accuse me of taking drugs to try to make myself sick. I wanted to punch her. Now I comfort myself with the knowledge she was pregnant with her first child and many women come down with thyroid disorders after childbirth. Karma's a ......

 

[Jules22871]

I was in a bad motorcycle accident almost 5 years ago. I came home from the hospital with an external fixator on my knee along with a huge splint on my lower leg, no casts, to many open wounds and incisions to be put in cast of any kind. The first thing someone would say is "Did you break your foot?" I can't walk without crutches, and I hear this one all the time "I was on crutches for 6 weeks when I stubbed my toe so I know just how you feel." They have no idea how I feel. I have been on crutches for almost 5 years now and I will never get off them. How dare they think they know how I feel.

If I don't wear my knee brace and my AFO brace for my drop foot when I go shopping, I get the most awful stares from people since I don't "look" like I need to be in the electric wheelchair. People honestly have no clue what another person is going thru. I wish that I would never here the " I know how you feel" mantra ever again.

Here is a something that I found very interesting and I often refer people to it when they question me about what I'm going thru

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

 

[Flitzanu]

wow, i'm going to have to come back and read these closer!

i can't really say that i'm "bad off" with anything, but i wanted to throw out a few thing that i have that are unusual

as with a lot of people, i do tend to have stress, GAD, and depression, and bounce back and forth on meds.

i have a malformed ribcage, my ribs are grown downward at an angle instead of vertically.

it's strongly believed i have Osteogenesis Imperfecta (my older brother DOES have it), i break ribs by being hugged. i'll have to tell my arm breaking story later.

i've had my tonsils removed twice (yeah, grew back...inconsequential really, but no one believes me)

i have Sleep Paralysis.

i have as spasmatic esophagus. really just an annoyance, sometimes i can't voluntarily swallow while drinking because my throat doesn't want to cooperate.

but otherwise, i know it isn't a comparison, but i don't have anything to make me that unhealthy, so i don't want anyone thinking i'm comparing or belittling.

 

[taz3cat]

Flitzanu, this thread is about illness, so we expect to talk about your and ours. Glad you feel your doing ok.

Julis22874, even if I had the same problem as you do I still would not know how you feel because mine may be better or worse than yours. We're unique individuals and our illness are not always exactly the same.

One other problem, I am not you. I can only see the world threw my own eyes.

I will say that most people mean well by what they say. Some times their well meaning words hurt. When my child died, welling meaning people told me all kinds of kind (they thought) things, they were not bad people, just people that had not been there, done that.

 

[Jules22871]

Flitzanu, this thread is about illness, so we expect to talk about your and ours. Glad you feel your doing ok.

Julis22874, even if I had the same problem as you do I still would not know how you feel because mine may be better or worse than yours. We're unique individuals and our illness are not always exactly the same.

One other problem, I am not you. I can only see the world threw my own eyes.

I will say that most people mean well by what they say. Some times their well meaning words hurt. When my child died, welling meaning people told me all kinds of kind (they thought) things, they were not bad people, just people that had not been there, done that.

Taz, that is very good advice you have given to all of us. I usually don't sound so bitter about it. Most times it doesn't bother me at all. I've never said anything back to people because I know that any pain that anyone else has felt cannot and should not be compared to mine. Like you said, we are all different. I have a very dear friend that has a problem with her neck and she is always saying "it can't compare to what you've been thru" I have to tell her to never minimize what she is feeling because you think what I've had happen is worse. Pain is not something to be trivialized. There is no such thing as good pain.

The one thing this has taught me to never say to someone is " I know just how you feel" I can't possibly know how anyone feels. Thank you for your very wise words