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Redhead
04-01-2008, 09:10 AM
I was diagnosed about a year and a half ago after several lengthy hospital visits. So a lot of people in my church, etc, know all about my health problems.

But ... I'm so tired of being known as "Sick Girl" that I don't want anyone who has met me in the last year to know a thing about it. For example, I joined a women's Bible Study and do not let on to anyone that there is something wrong with me.

Also, I am a free-lance musician and would never want it to get "out" to the people who hire me, because I'm afraid they would see me as sick/disabled/unreliable and stop calling me.

But ... sometimes I wish people did know. For example, one morning everybody in the Bible Study had signed up to bring food, and I just was feeling bad and couldn't manage it. Sometimes I suspect people think I'm lazy. Or sometimes I just wish people knew I struggle sometimes, with three young children and an illness.

But at the same time, I believe the people who DO know, treat me differently and see me differently. One woman with Lupus told me that she once had someone physically get up and walk away when she mentioned it, as if she was contagious.

What has been your experience? Do you tell most people? How do they react? If you don't tell, why not? Do people treat you "less than human" when they know?

THanks
Jenny

rob
04-01-2008, 09:40 AM
Hi Redhead,

I was the owner of a small business, and my dozen or so employees knew something was wrong. I finally had to tell them. I was doing things that on the surface seemed rather odd. I told them so they could understand some of my odd behavior. I have terrible fog, and will wander around clueless some days. I ended up selling the business, and I'm on full disability now. I also had a nasty breakup, and since then, I've not told anyone. I just sort of dropped off the radar. I found some people to be very understanding. But most people don't get it, don't care, or are just so "into" themselves that they can't be bothered by sick people. I've had people who I thought were friends, and family members, accuse me of faking my illness. Accuse me of malingering, accuse me of ripping off Uncle Sam because I get sull SSN disability. I guess they all forgot that I started my own successful company, that my work was my dream job, that I'd spend 50-60 hrs a week on the job because I loved my work. To go from what I used to earn, to SSN disability, was a huge step down in income, but I guess they never thought about that either. It also is funny that all my various evaluations to qualify for SSN were conclusive, and without question a clear diagnosis of SLE. You don't get disability for faking it. I'm still quite bitter about the way I was treated by people who I thought knew me, who I thought were friends. I gave up turning the other cheek, and now tell those who accuse me of such things exactly what I think of them, and I'm not exactly polite about it anymore. Oh well, such is life. It's nice to come here and talk, and vent if need be. There's always understanding and acceptance here.

Shyce
04-01-2008, 09:46 AM
THESE days i dont bother to tell new people about my condition. its so far along, i know they couldnt understand it properly. but then at the same time i tend to avoid new people. especially when i have the rashes. ppl actually consider me contagious.

i too hate the notion of being the sick girl. which is why only those closest to me have ever really seen me at my worst. if im around other ppl, i try as much as possible to be "normal rachie"... "old rachie" the rachie they are used to. i hate the questioning too. i noticed in older posts a lot of ppl who mention their conditions have persons saying how they kno someone else with it who lives a fine life, and you would never know. i get that too. but what i get even more... "you know i've heard of someone who died from that"

thats what irks me. because they say it as a matter of factly. and i know whoever that person was struggled like im struggling. i actually have a former friend too who has since ignored my existence, because he had a friend with the condition, who presents no major issues at all, working fulltime and just doing fine. but my case is very different. he eventually had nothing but negativity towards me.


for the most part now, i just keep it to myself. i used to get the rashes on my face, but thank God, no more. they now exists EVERYWHERE else on my body and look awful. but its easier to cover those up, than when i had them on my face.

Phoenix
04-01-2008, 09:00 PM
I never tell people. People in the past have accused me of "faking" being sick as well. I pretty much dropped off the radar as well. People in general don't care about anyone but themselves. Between this and other autoimmune diseases and my cancer last fall, people just think I make up being sick. It's not fun being 26 and living in a cave basically. I am so extremely affected by the sun it's really hard to go out anyway.

sick n tired
04-02-2008, 08:53 PM
Hi Redhead,

I do understand you not wanting others to know. I really don't want that to be the only thing that others talk about when they see me, but I want them to know that there is a reason other than laziness that I was unable to help.

I think that the Bible study should be told some of your health problems if for any reason it would be for prayer purposes. That is what I have done.

Take care,

Karen

Oluwa
04-03-2008, 05:15 PM
Jenny, Hi I am Oluwa...welcome, meeting everyone I see...

I tell anyone, but not to seek out their understanding or empathy but to let them know in case...or to thwart off their questions before they ask. What happened to your face...you don't look too well. You okay..aren't you hot?

I haven't been treated awful, more of a look of concern, empathy...

For me, it is easier to be the one who understands they may not get the jest of it, than to have them try to understand my pain, fatigue and etc. All that explaining gets too frustrating for me.

Keep searching for your wellness,
Oluwa

AnnMarie
04-03-2008, 07:23 PM
Hi ladies,

I lost so much weight that people were asking me is I had cancer? Gosh I have gained a few pounds but I imagine i must have looked real bad.

When I got the mysterious rash, I hid. I admit it. I am vain and always have been. This is a humbling experience.

I have had people ask me why I am wearing sunglasses in the super market and on rainy days. I tell them I have sensitivity to light or I have an illness. That usually shuts them up. It is cruel when you find out a so called friend talks bad about you, like your faking. Example, once a week I go to yoga classes. the first session I made it to 2 of the 6 sessions. I had a so called "friend" say to me, "oh you can't work full time but you can go to yoga. If she had seen how many days I missed an new many positions I just can;t do, then perhaps she would not have formed this opinion. I guess you really find out who your friends are. I do NOT beleive she deserves an explanation, nor will I ever give her one.

I only tell people that I feel should know. My lawyer and my professors. The rest, I tell them I have been sick...and that is it...no explanation. My family, I really down play it, so they do not worry. I have learned to isolate when feeling my sickest. It was my elderly neighbors who asked if I was undergoing cancer treatment. They had know idea how it devastated me because I knew i did not look good, but I truly believe they asked so they could offer help. I guess you take the good with the bad.

I am sorry to hear that Phoenix also had to deal with cancer. I hope you are okay. I hope I didnt not offend you by mentioning people thinking I had cancer. I wish you well, to have both must be a difficult journey.

Respectfully, annmarie

sick n tired
04-03-2008, 09:56 PM
Hi Annmarie,

I had a friend do that to me. For me there has been a shake down of friends. The ones that can deal with the new me and the ones who think that I am "making a big deal" out of everything. The most amazing thing about her is that she has fibromyalgia. It is a very mild case so she believes that mine should be like hers. I wish........I would love not to have to take anything, be able to have a clear head and to work a full time job flawlessly.......We no longer talk

So I am in the process of making new friends. I have two good friends that know me and have been with me for years. They and I have stood the test of time with each other and have been through other valley experiences with each other.


So here's to making new friends,

Karen

jesseyleigh
04-06-2008, 12:53 AM
one of my long term effects has been insanely low blood pressure from Topamax (nasty stuff!!) i tend to colapse and become unresponsive (like a reboot). I have made the decision in the past not to tell anyone and then boom i hit the floor (fully aware of everyone freaking out around me), i had to start telling people. So a few people know whats wrong many more know "something" is wrong but what it is none of their business. The people closest to me (my close friends and boyfriends) know exactly whats going on. That way they arent also offended if i cancel last minute on plans. Its a pick and choose battle

Shyce
04-06-2008, 06:24 AM
ditto on those words jesseyleigh,

its just a need to know basis. but those im around a lot, or the most are fully aware

ColleenT
04-07-2008, 03:24 AM
I was diagnosed in mid Feb with SLE and Sjogrens. Since then i have been back to my doctor once, mainly to ask a million questions about something I'd never known much about.........if anything at all! My husband and I decided that we would keep quiet about my condition. My doctor said it wasn't a serious condition and most people with it, die of old age rather than the condition itself.

I was diagnosed with epilesy in 2003 after a very bad "fall" from a standing position straight onto my face. I fractured lots of bones (cheek and the orbital bone) and after an EEG I was diagnosed with epilepsy. I also had an MRI which showed that I had enlarged ventricles which could very well have been as the result of a bad bout of menigitis I had when I was 4 years old (I'm 48 now). it turns out that I've most likely had it for a while and that the fainting spells were not fainting spells at all! Because of my badly bruised face after having plates put in (My neurologist teases me about sticking to the fridge if go to close) everyone wanted to know what had happened. Ofcouse I told them . Now everyone knows I'm epileptic.

I really am fine most of the time, and while I do appreciate everyone's concern and interest about my health I often feel that I have more to me than my condition! So this time round it is my secret. My husband knows and as yet I have not told my children either.

This forum for me is just wonderful. Although I must admit that having read so many posts now, I think I am one of the very lucky ones. It is so informative and everyone has such, understanding and compassion.

I heard a fabulous quote recently
"You get the most experience in life when you don't get what you want!"

Perhaps that is why people who are apart of this site have such warmth.

ColleenT

sick n tired
04-07-2008, 10:26 AM
colleen,

I am sorry for your bad seizure. I have fallen down stairs with mine and one was had while I was water skiing. God has always protected me from serious harm.
I also can understand the point that you made. I never tell anyone that I am epileptic. I am totally controlled and it is just a need to know basis. I have noticed that people treat you vary differently when they know about the epilepsy.

Years ago, I had a seizure while in P E at college. The classmates treated me very differently. The disabilities director came to class and had a talk about what epilepsy was...I never went back to that class and transferred out after that semester was over.

Blessings,

Karen

teresaa40
04-07-2008, 08:58 PM
I really avoid telling anyone. I especially worry that if I tell my coworkers, that I may end up being passed over for promotions, etc, because they think I either can't handle it, which may be true, or that I won't be around much longer so why bother. I am also afraid of being basically fired, only under some other guise, so they don't have to deal with me calling in sick, or leaving early. I haven't really called in except maybe a couple of times, but, it would seem like I am always calling in sick if they know I have an illness. People just focus on things like that if they are already looking at you differently.

I am thinking of telling my kids' dance teacher, though. My daughter was supposed to be in a dance competition about an hour drive from home, which would have meant driving in the dark two and from, and navigating downtown traffic and parking, and sitting in stadium seats for hours. It was after I had worked the night before until 1am, got up in time to leave the house at 9:30 to get the kids to their morning dance classes, stayed there til after 2pm, and then dragged us back home. I just couldn't risk driving up and back, in the dark, with my night blindness, and being so exhausted, just for a dance competition.

So, I am sure she is just to the point of frustration with us. I have had things like this come up, where I didn't want to risk driving when I was so tired. My kids safety is my first priority, but, she deserves to know why I am unable to handle what all the other moms seem to deal with just fine.

I only tell those who really deserve to know, regardless of what their reaction might be. I suspect she will be either completely sympathetic and understanding, or that she will not believe I am really sick. Guess we'll just see.

I'm waiting to tell anyone at work until I absolutely have to.

sick n tired
04-07-2008, 09:03 PM
Hi Teresa,

I have been in a similar problem with dance....so I agree...do tell the dance instructor perhaps she will be able to find a ride for your daughter and/or you.

Your other thoughts on second thought, seem the right thing to do. Leave in on a need to know basis. I have told some of my kids teachers, however because I am not able to help on a class trip or party. I would rather them think I was ill and not just plain lazy.

Blessings,

Karen

sits_inthe_corner
04-08-2008, 01:59 AM
I'm in limbo..so I dont have anything to tell anyone cept that I feel like cr*p.

But if and when I do get diagnose....I'll be mouthy about it :twisted:

Course I say that now, but who knows...I just think it's important to stand up and be counted. It is what it is...and if my friends and family back away then they weren't going to support my no matter what I said or didn't say.

Some of them can be pills as it is. When I'm not feeling up to something then they do the eye roll thing. But that's the way it is. I do what I can and rest when I need to.

I expect to be treated the way I treat others...with respect.

ruthie213
04-11-2008, 10:12 AM
this is something i have struggled with, my tutors at uni know, but i dont tell my work where i also do my placement, am i being nieve that im going to be able to carry on with my studies and get a full time job when i graduate, i think it would really depress me if i couldnt have a semi normal life, i have already had to cut back on so much, i miss the once active me before i started getting major symptoms

AnnMarie
04-13-2008, 03:31 PM
Ruthie.

Keep going to school and studying. You could improve, and the progression of medical based science may bring a cure or something close to it.

We need good, compassionate teachers!

Annmarie

sick n tired
04-13-2008, 03:43 PM
Ruthie,

No I don't think that you are being naive when you try to have a job after school....many of lupus people have jobs. It might be harder at times but if you are able it is doable. You can't stop dreaming....dreams can be like hope....I need hope to go on and we do have the hope and dream, if you will, that a cure is around the corner.

I do know the grieving process that happens...it is hard when you are young to have to cut back..I am sorry that you are down about that. You are going to find a new "normal" for your life and be able to fit it around. I have a daughter who is making plans to go on with her life and finish university and become a nurse....I know that the future is not as clear with her as it is with most college kids...but I am glad that she is trying to pick up her life and go on and dream....

I hope that you are having a better day,

Karen

sits_inthe_corner
04-13-2008, 04:03 PM
Ruthie

You can do what ever you want. The important thing is you take care of your health while you're doing it.

My sister works full time and she's a hockey mom :shock: nothing holds her back. She's in remission for the lupus, but that wasn't always the case, plus she has ceiliacs which has it's own issues.

I worked for 15 yrs as a special needs teacher. And now I work as an office admin.

Just listen to what your body is telling you, sure you can follow your dreams. What else have ya got to do? :lol:

mnjodette
04-13-2008, 04:22 PM
This is an interesting thread! It IS awkward to tell some people. Everyone at my office knows because I got very sick and ended up in the hospital, several times in a short period. I've worked there for 20 years - I know them all very well and had to tell them. They've been great, and even worked with me to 'design' a part time job that I could do instead of the 'pressure-cooker' position I had been in. That's going above and beyond for someone!

Others? I don't know - I think the 'need to know' basis is the right response. I think you know when the time is right to share that kind of information. And sometimes it's just necessary.

Everyone reacts differently. Some are really kind and concerned when I tell them. Others have almost no reaction at all...sort of "Oh? That's interesting." Lots of people will want to share what they know about someone else who has lupus (or some other related disease.) Some people behave like I'm dying; other's behave like it's no big deal.

My hubby, interestingly, seems to tell people more often than I do, and he's more likely to give updates to friends and family. I think it's his way of coping.

We all have to do what's comfortable, I guess. No right or wrong answers here.

Jody

sick n tired
04-13-2008, 04:28 PM
Yeah Jody,

My hubby is the one who talks about it more, too. I never thought that it was a coping method...hmmm...very interesting, I think you are right. :)

Karen