Experiences with Lupus

Hi all. I am new to this support network. I was diagnosed with Lupus in 2012 and am 25. I am a doctoral student, struggling to reduce my fatigue and joint pain, while simultaneously struggling with how to communicate about my lupus to my friends, family and peers. I was wondering what some of the best and worst experiences you have had explaining lupus to your friends/family? Additionally, I was wondering what you have gained, if anything, from this support group?


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Hi. I understand it is really difficult to talk about lupus with people who do not undrstand what this disease is and it does to your body. I have hard time expressing my struggles to my family and friends. Some do understand. But eventually they get tired of your rants. Some slsp stuff like “but you don’t look sick so stop making excuses up” straight at your face. My worst experience came from a doctor though. He said that all the blood work is just wrong and its all in my head and I need to see a psychiatrist!
So over the time you just grow the skin of rhinoceros and do thing at your pace. And that is the best you can do. :blush:

Hi Mapril93-
My experience with Lupus (8yrs from diagnosis; 18 months to get diagnosis); has been interesting. Lupus can attack any organ or tissue in the body. I have found when my lupus flares I suffer mostly with low back/knee pain & pericarditis/pleurisy. I’ve had a heart attack related to the lupus & have suffered with pleurisy & pericarditis since. Lately I’ve been dealing with more frequent episodes of “lupus brain”. I know it all sounds horrible— obviously not the life that one strives to obtain— but the important thing to remember is you have family & friends that love you dearly— leaning on them when you need to doesn’t make you a failure or weak. I had to learn to be okay with not being the high energy active person I used to be- if that is You; you still have your whole life ahead of you— you can still accomplish a lot while living with Lupus😉.
I chose to educate myself about medications & the disease. Being careful not to freak myself out. Learning “my” Lupus and taking the time to educate my family and friends on how lupus has impacted my life has been helpful in creating some insight to what I’m experiencing (as much as can be expected anyway😊).
I know this may sound awful— but your friends and family can’t relate to what you’re experiencing; so what I do is I limit my venting with them. I now only keep my family in the loop of a “new” diagnosis; treatment therapy; and when I’m in a flare. They step in & help when/where they can.
When I need to vent— I vent with a friend who has a different type of connective tissue disease or a forum like this.
I am new to this forum. One of the struggles I am having is finding the right forum that fits me.
I like to approach life with glass half full; while respectfully recognizing there will be some glass half empty days.
FYI— eating the right foods has been huge in controlling my lupus flares and inflammation markers. Cucumber & Lime water is my staple. Something you may want to explore.
Best wishes…

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I am similar to you. Took 12 years to actually get a positive day notices but have had all the symptoms for all that time including three more autoimmune diseases. I have grown children and have missed out on so much with my very young grandchildren. I pushed myself with my children until I just could not do it anymore, I own my own business etc. finally had to go on disability, again not having the Lupus diagnosis to do so. But the fatigue and pain Have caused you so much disruption with my boys they just don’t seem to understand. When you feel like you cannot get up to walk across the room and when you do your very unsteady, they do not see that side of me since I do not get around them when I am in a flare. Do you do you do you not know what I would do without my husband and my best friend, only two that really understand and have seen me at my worst. Things are making a lot of sense now since the true diagnosis although I thought I’ve had it since my other issues don’t cause the symptoms Lupus does…

Please forgive my typos since I find it easier to talk my words.

I’m glad you have found the reason for your pains.
I don’t let the lupus define who I am.
I wish you well…