question:when you were all first diagnosed how long did it take you to tell people?and how did you get comfortable .? i don't like telling people because i don't want them feeling sorry for me. i honestly feel a little ashamed..i know i shouldn't be . i don't know how to tell people without feeling uncomfortable.i don't like even saying it out loud ..
when i was first diagnosed with lupus, i was pretty happy. I know weird it may sound, but i was glad to have a name at last. I am a student and just before diagnosis missed couple of month's classes. All my faculty and friends were curious to know what was wrong with me.And I was supposed to submit documents and certificates from my doc to continue classes. So most of the people already knew at University. I agree it was not comfortable and I received mixed reaction when i joined back after a gap of 6 months. Few turned sympathetic towards me, few were scared to even share meal as if it is a contagious condition, few started seeing me as inspiration since every day was a struggle to attend lectures and complete deadlines. Not a single person treated me the way they used to before.
Now i know there is no point in telling people and i try to avoid as much possible. but yes i am not ashamed of it, and i think you should not feel the same. its not in our hand that we suffer from something like this. I do not say it loud either, but i do when i know i need to in order to avoid anything that might trigger a flare.
there is nothing to feel sorry or ashamed about. Rathar you should be proud of yourself that you are fighting it.
stay strong. warm hugs. :)
When and if you decide to tell people, make sure you explain your illness to them. Make them understand or they won’t know now to handle you. I have friends who completely seperated and no longer around but, that let me know who’s my true friends. They did me a favor:)
Who is it you think you need to tell? Significant others should know but I personally don't find the need to tell casual acquaintances and co-workers. Nor do I feel the need to explain in great detail all the ins and outs that might possibly happen Lupus is such a variable disease and nowadays people do live a full lifetime with this chronic illness.
I only tell family and friends that’s in my inter-circle. I have told some od my children teachers and coaches bc they need to be aware of it and when I’m not able to attend school functions or if my children have to carpool with a schoolmate or coach. If I see some classmates or old friend while barely walking on my cane, I May tell because it’s shocking for them to see me like this with my weight gain, moon face and etc… I was a social butterfly and very activewith my children b4 I was dx a year ago. As far as the opposite gender o, someone your wanting be involved with I won’t mention it until it’s serious or wanting to hang out with them.
The less people know the better off you are unless it is immediate family and then you can explain to them if you choose. You donot have Lupus wrote on your forehead and you will know when to tell someone it will be a sincere moment,some people are ignorant to the fact and you can educate them if you choose too.one thing to remember once you tell somebody you cannot take it back in my old work place it was designed of 200 or more so employess only 4 knew and the last person I told was my last day of employment ,alot knew something was wrong because the year that I was had lupus I was out 7 months but went back before I was layed off there after.
I have an article for the month of may that will tell my story please read and share
I told my family and then shared only when I felt like it was relevant or someone asked. As soon as I shared I found a bunch if people that I never knew had lupus. Even some of my family. Now I have a great support system of people who can relate to what I am feeling!
Please check out the latest article
iHi
I told everyone right away. Mostly everyone got all the info they could. about this disease... I don't want anyone to feel sorr for me. There's nothng to be ashamed about. You didn't do anything wrong. At least when I have to cancel plans everyone understands.
Stay positive.
Cindy
I say I was diagnosed with lupus rather than I have lupus. For me the more I said it the less impact it had on me. It has been a year now I have learned so much about myself and family. I hope you will be able to accept who you are …the diagnosis is just that a diagnosis . Like a cold.
Wishing you a wonderful day !
Maybe it’s different for me because I developed it as child. In high school I had one girl spread the rumor that I had AIDS because I had said I have an autoimmune disorder. Some parents heard those lies and called the school in a panic. The sad thing is that she did it because she wanted my boyfriend. That was when I knew I had to talk about it and explain to people what SLE is along with Sjogren’s etc… I never try to hide it anymore. I actually like it when people confront me about using a handicapped spot because then I can educate them about invisible diseases. It also lets my friends know so they don’t freak out if they don’t hear from me. Talking about it makes it less shocking. I hope you feel better soon.
I work in the health field. In general I choose not to tell people. Just a personal decision. However when you miss 3 weeks of work due to a ten day hospitalization, people find out. I don’t feel like I am treated differently except people give me that look and ask how I am doing now.
Keep looking its in the back of the magazine
THANK YOU ALL! so i decided to keep it to myself for now until i get comfortable or its necessary . when i do decide to tell anyone i will educate them in it because if not i'm going to hear what we all do '' but you don't like sick'' ha also because not enough people know about this cruel disease .ya'll are right i shouldnt feel ashamed its not something i chose but i will try to conquer it ! i'm not going to lie its hard to be positve when every joint in my body hurts and i cant get out of bed for days. you all such beautiful inspiring people so i thank you from the bottom of my heart for helping me through this journey .thank you for giving me faith and strength.
This is a tricky question but not a trick question. I have read many of the responses and it shocks me to see how many of my fellow lupus sufferers are reluctant to talk about this incredibly debilitating and potentially deadly disease. Maybe we, as a group need to deal. Because I remember a day when we treated many other diseases as if they are an embarrassing inconvenience ie: HIV, cancer, Alzheimers, Parkinsons.
I believe that it is no coincidence that the squeaky wheels of each of our experiences create a direct correlation to the attention placed on these diseases in terms of treatments, and cures. So we each have the responsibility to one another and to the whole, in educating those around us, regarding this incredibly devastating disease. If we cannot admit our situation, how can we expect others to fight for our plight. No wonder the cause of this disease has not yet been found. Until we are willing to deal with and educate others regarding our Lupus, we will be treated as the hypochondriacs that we absolutely are not.
Well said Lone Wolf.