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Anyone Have A Loved Family Member Tell You They Don't Believe You're Sick?

Anyone Have A Loved Family Member Tell You They Don't Believe You're Sick?

My sister and I are extremely close. She is my person. I love her and have supported her through everything. Over the Thanksgiving Holiday she informed me that she doesn't think I'm sick and that if I could just stop thinking I'm sick all of the time I wouldn't feel so bad. I tried to have a normal conversation with her about it, but she was just saying extremely mean and ignorant things. She clearly hasn't researched lupus or what it could mean for me. She lost her daughter 7 years ago (at the… read more

posted November 27, 2017
A MyLupusTeam Member

I’m a naturally cheerful human so I was hoping it was just ignorance on the part of the people who said I was being a hypochondriac/faking (even those who saw the devastation being wrought over the last several years firsthand). I’ve been accused of having some sort of mental problem, ‘imagining things’, and treated to the utmost disrespect even by family members. It is not an illness I would volunteer for-as an artist the loss of mobility makes it quite difficult to participate in expos and gallery events, travel is restricted, and the unfortunate aspect of being rendered allergic to 98% of the medications that could help with the symptoms is holding me back. There is nothing more frustrating than having people view me as ‘sick out of convenience’, while suffering from a most inconvenient disease.
People will always see you as they choose to, which can be wholly separated from fact and logic. Your job here is to educate those who can be educated and ignore those who are willfully ignorant. You will not miss their smug judgement of your conditions- if they treat you with disrespect, let them have their opinion and stay the hell away from them so that their ignorance does no further damage to you in the form of stress.

posted January 29, 2019
A MyLupusTeam Member

i go through the same thing with one of my daughter's and friends that i have. just recently i lost my train of thought and i also could not remember a portion of his SS# and they both made a comment like i was going crazy or that I needed to get it together. I replied by saying if they would research and read about the disease then would know that particular symptom is from lupus. it is so hurtful and annoying when people tell me if I wasn't sleeping all the time then maybe my joints wouldn't hurt or I need to exercise but yet my feet are crippled and I cant walk or stand more than 10 minutes or when I'm told if I change the way I think and stop the meds I will be fine. I have also heard that its the meds that are making me sick, I totally get what your saying and know how u feel. you are not alone

posted November 29, 2017
A MyLupusTeam Member

Reading through this blog makes me realize how ignorant people are of this disease. No amount of rest will take away the fatigue. Eating right may make you feel better but chances are it may not. You can’t will away, ignore away, or sleep away Lupus. Someday it may be cured, please God, but right now there is more they don’t know about this disease than they do. If you have someone in your family with Lupus love them by not questioning how they are struggling based on the way they look. That is the cruelty of this disease. You may never look sick and yet be very sick. Don’t try to give them remedies of diet, herbs, oils, or other fly by night cures. The best thing you can do is be there for them, support them when they’re not feeling well, offer to help them and don’t question the degree of their fatigue because you cannot see the fatigue of lupus. Plain and simple. Lastly do not lecture them. You may think you are helping them by giving them advice but most the time you are not!

posted January 28, 2019
A MyLupusTeam Member

It's almost like I should look sick and not wear makeup or do my hair. They don't understand that I may look ok but I don't feel ok.

posted January 11, 2019
A MyLupusTeam Member

1st - BIG hugs to all of you! I admire your perserverance and effort to be you the best way you know how!

2nd - I wanted to share that our "words create our worlds." You see....too often, people (family, friends, co-workers, etc) see the issue/disability/problem far more then they see the person who suffers from it. Whether it be Lupus, Heart Diseas, Cancer, etc - this fight is so much more harder without our natural support. It's hard enough that our diagnosis is difficult to digest, but we also have to find coping methods to deal with the words of people who loved us when we were energetic, had lots of money, went to wee hours of the night to entertain them....not sure about you - but that's exhausting!
So create a space within you that will not allow negative vibes to take you down. Easier said then done - this I know too. But it starts with you!

3rd - thank you for being here for me! This fight, like I mentioned earlier is difficult - but to know that I have a family to turn to here who understands the walk - makes it a little easier to cope.

We may not have all the answers - our family & friends may even walk in a different direction or put on that fake mask in our presence - but know that our WORDS creates our world!

Take care & God bless you all!!🕊

posted October 19, 2019 (edited)

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