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Family Support

How do you handle lack of support from your spouse or significant other? how do you get them to believe your lupus is real and can affect you instantly without warning?

  1. I have been fortunate in that most of my family and friend are being very supportive, while others are hesitant about what to say or they don't understand how my life is gonna change as this condition progresses.

    1. , I'm so glad to hear you have a solid support system around you! It can be so difficult to explain the realities of life with lupus to someone who isn't living with it every day.
      Gabby (team member)

    2. Oh that is so good to hear. I love hearing that family is supportive. it makes it that much easier to deal with those difficult times. ~Racquel~ team member

  2. I find it pretty standard. My PCP doesn't support me, so expecting them to be supportive is my standard.

    1. if your pcp does not support you or is gaslighting you, it is time to move on. Are there other, either family medicine, or internal medicine offices near by? If so, in my opinion I would be going to one of them. Bc living with lupus is hard enough as it is, without awful drs who don’t support us. Simply bc they don’t understand our conditions. If you can, try and get in with an internal medicine dr. Bc family medicine emphasizes comprehensive care for patients of all ages, internal medicine focuses on the prevention, diagnosis, and treatments in adults. If you already knew this or have tried this and had no luck. I am sorry. But this is one of my biggest soap boxes. I always say that we have to be our biggest advocate bc no one else will ever be able to do it like we can. Hope this helped somehow. Sending all the positive and good vibes! Amber ( team moderator)

    2. sorry your PCP has no clue. That has been the story of many unfortunately. Sometimes even rheumatologists don’t support well either 😩 ~Racquel ~ team member

  3. I don’t have a SO, but I have been so lucky to have a very supportive family. They let me live with them for five years when I couldn’t live on my own bc I had no income. I know not everyone has supportive family so I know just how lucky I am. I will never take it for granted.

    Amber ( team moderator)

    1. With visions of suicide dancing in my head. I know. Not funny.

      1. oh I hope not. We are here if you need to talk always. Life with lupus can have us too much in our head and so many thoughts can arise. I hope today you are okay. ~Racquel~ team member

      2. it’s hard but try and get yourself some mental support to get you past these periods of despair

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