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To Share Or Not To Share?

To Share Or Not To Share?

This is a question I posted on another forum that I didn't get many answers to. First off, I'm newly diagnosed, so this question is not meant to offend anyone or judge, I'm just trying to understand others point of view :-) I've noticed a lot of people with lupus tend to keep private about it. I understand not wanting to talk about it all the time, and not wanting to feel like the disease defines you, but...why does it seem so many are so secretive about their disease? It could be just my own… read more

posted January 15, 2015
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A MyLupusTeam Member

Hi Ladies, I agree that people don't believe your sick because "you don't look sick". It affects everyone differently and then the same, different organs are involved, but the same symptoms. I joke and tell people unless you are carrying your right leg in your left arm and your eyeball is hanging out, they are not going to think you are sick. I mean really? Those of us who can live a full life would like to, even though we have all the pains and discomforts. I was diagnosed in 2003 and I am getting and recognizing new symptoms that I didn't before, I guess it was because I was a caregiver to several people and putting their needs first and ignoring how I was really feeling. Why would anyone want to fake being sick? Don't get me wrong I know there are illnesses out there where people do things to get medical attention and they are found not to be ill at all. I have always been a healthy person, no smoking, no drinking, no drugs ( unless prescribed by my doc and not anyone else's) I worked out and loved going to the gym. Now I have chosen to explain that I have Lupus,cause when I get brain fog and/or having unbearable pains that I can't work, it is very frustrating.

posted January 15, 2015
A MyLupusTeam Member

I'm not entirely sure but -I think that is a big part of it. Maybe it's different for everyone. My mother in Law thinks that if I mention my pain that I am whining since it can't be as bad as her sisters cancer pain. We so desperately need awareness. Another thing that makes it hard is that so and so's grandmas lupus isn't the same as my lupus so- it really is difficult for someone to understand that I may not be able to work while she may have worked a 40 hour week until retirement.

posted January 15, 2015
A MyLupusTeam Member

I am with you and do try to educate and tell people. However, I think that because it is so hard to diagnose and so hard to "see" that someone is sick with lupus many people have been accused of faking it. For instance, I have had Lupus since I was 15... No one in the family challenged that. However, when my older sister got sick last year and was diagnosed with lupus her husband and kids have accused her of faking it and her doctor of being a quack! They flat out don't believe her or support her. They think that she wants attention. (she is on Plaquinil now and doing better. Luckily she is listening to her DR. Her same family gives me a hard time for my diagnosis of secondary fibromyalgia because they don't believe it exists.

posted January 15, 2015
A MyLupusTeam Member

I could not have said it better myself... I'm so so happy to find there are people that feel my pain. I mean I'm sorry for anyone I would not wish these diseases in anyone. I have Lupus, RA, and Sjogrens primarily... But several other things as well. No one ever thinks I need to rest in the daytime or why? Do I need so much sleep sometimes?? What's wrong with me? Right, I tell them and it's oh okay well can you do x,y,z for me today?

I feel like until I'm in the hospital for weeks and I have a severely physical symptom. No one will see or care how I feel. How could I feel bad when you look so normal or healthy.

Power to us all to survive our lives basically on our own or through this support group!

You all give me strength and courage.

posted January 15, 2015
A MyLupusTeam Member

I agree, it is a double edged sword. We only make it worse if we don't talk about it. However by opening up about Lupus, we also open ourselves up to the pain of family and friends judging us. On the other hand, we can't expect them to respond appropriately to something they don't know about...! I tend to pick and choose who I share details with based on how much energy I have to deal with that specific person. I do however open myself up for questions by posting awareness pieces on Facebook and wearing Lupus awareness things sometimes. Mostly I am ignored or overlooked illness wise and people that I know flock to those we know that get sick with cancer or other more known problems. But I can say that everyone who knows me, knows that I have Lupus!:-)

posted January 15, 2015

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