Family acts weird | Lupus Forums at The Lupus Site
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Family acts weird

Discussion in 'Newly diagnosed' started by Ana_5678, Apr 19, 2019.

  1. Ana_5678

    Ana_5678 New Member

    Sorry to bother you again.
    A second doctor confirmed Lupus based on blood tests and symptoms, but my family and friends just won't have it. I'm not sure what's going on, but they're not helping.
    My mom is not pleased with the diagnosis and wants me to repeat the tests, my husband thinks I just need vitamins and my friends are telling me it's all in my head and I should just relax more.
    I don't understand, is this a coping mechanism on their behalf? Are they all in denial?
    This is not helping me at all and I feel so alone.
    I don't know how to talk to them. I just need someone on my side because I sometimes get scared. This is new to me and it's even more difficult when I'm always in pain and made fun of.

    Edit: they're all educated people with Internet access and we talked about the science behind Lupus, blood tests, etc.
    Lupusdude likes this.
  2. x_claire_x

    x_claire_x Moderator

    Sadly, this is a common scenario for family and seems they don't want to believe it of somebody they care about so they just plain deny it...which leaves us stranded :0(

    There is nothing you can do except keep quietly asserting that the Drs with years of experience are highly unlikely to get the diagnosis wrong in the face of such strong evidence and it is very detrimental of them to keep just dismissing the diagnosis, and therefore by I had to come away from certain members of my family as it was impossible to get through...though I took a photo of all my meds a month ago...and when my elderly father moaned about taking two tablets.. I stopped the car, showed him the photo, which shocked him...told him I didn't want to hear him complain ever again !!!! Mind you my exasperated husband tried that years ago and he just shrugged and said...'she will be fine' at the time I was very sick. That was ten years ago !

    With treatment, you should slowly start feeling better...indeed I feel better now than I have for years despite having some lung involvement. Early meds are important to stop any damage to internal organs , so the quicker you can start treatment the better for your body.

    There is a helpful theory called The Spoon Theory....which explains to family about your energy levels.... I know loads of new mums that use this analogy but their spoons last a lot longer than Luppies….. and you have everything going on. It might help relay to them how hard it is for you to manage everything. Take care, be kind to yourself and you may have to just see if any of your relatives would be prepared to come online to discuss this with all of the people here that know it to be their daily reality .

    Take care...……..Claire
    Last edited: Apr 22, 2019
    Lupusdude likes this.
  3. Ana_5678

    Ana_5678 New Member

    Wow, thank you so much for your message. The spoon theory makes so much sense.
    "Some people with a disability may not be fatigued by the disabilities themselves, but by the constant effort required to pass as non-disabled." --> YES. This as well.

    I don't mind family members complaining about their own health issues and pain, because it's not a contest, but I do feel dismissed as if my suffering is not real. And that's just not fair.

    My daughter is 14 months old and I should stop breastfeeding before starting treatment. It breaks my heart because we're not ready to give up our special bond. Meanwhile it's difficult to live with the symptoms. I wish I weren't so alone in this.
    Thank you for your words, and I'm glad you feel better after all these years and treatment made it easier for you. There is hope.
    Lupusdude likes this.
  4. Northernelf

    Northernelf Registered

    It truly does take time - my husband is probably the only one who really gets it and 10 years in, that's been the last 4 or so. He sees how I can't do as much, he see me trying to move in the morning, being exhausted in the evening - and not doing the things I used to & still want to. He 'sees' me being in pain when it's bad.

    I don't talk about it much with others but they will truly never understand so I don't bother. I think my adult daughter understands a litte because she has her own issues. Even my husband doesn't truly know because how could he ? I can't believe a person can be in this much pain, how could he ?

    Keep plugging along....
    Lupusdude likes this.
  5. lazylegs

    lazylegs Moderator

    The breastfeeding issue depends on the medication you will be on. You will need to discuss the pros and cons with your doctor.
    Lupusdude likes this.
  6. keebler

    keebler Moderator

    It is hard for us to understand lupus let alone our family understands it.
    I have found that giving examples helps with my husband. examples.... my wrists feel likes someone is holding them and trying to squeeze them to death, I cant even squeeze a wash cloth out with out it hurting. That way they can picture it in their minds.
    On the outside we look normal. They need to make x-ray glasses so they can look inside our bodies. Our fatigued is like a car that has ran out of gas, it's empty won't go any further or when all the air leaves a balloon it is flat nothing in it anymore. Or we feel like we have run into a brick wall.

    Have you taken your husband to appointments?

    Take care,
    Lupusdude likes this.
  7. Skylerblue

    Skylerblue New Member

    I’ve had lupus for 30-plus years and you will drive yourself crazy trying to explain lupus since it has many plus symptoms. Not everyone has the same symptoms. Your best bet would to explain it once to family and friends and be comfortable with your explanation. It will be up to them if they choose to educate themselves. Having lupus had been tricky and mysterious for me. I have lupus nephritis and lupus anticoagulant disease. I have gotten second opinions and it was horrifing. One doctor At Michigan’s best hospital said I didn’t have lupus it was arthritis. After having my labs drawn, the tests showed the lupus anticoagulant. Another doctor I saw spend 10-minutes max with me. I was laying on the table and he was pressing certain areas of my body. I was not sure what he was doing. He said, well you have fibromyalgia and most lupus patients get fibromyalgia. I guess what I’m trying to say is:
    Take care of you, be good to yourself even though on bad days it’s a very lonely place to be in. You should never have to explain to people what lupus is. Let them get educated if they truly are concerned. Your not alone. I find myself feeling like I’m trying to convince people that I have lupus.
    Life is a pain with lupus and even though I’ve had it for years, the fatigue becomes overwhelming and I sometimes want to give up. Your never alone
    Last edited: Apr 25, 2019
  8. Skylerblue

    Skylerblue New Member

    Edit: I realized I mentioned lupus has 80 plus symptoms. That was a typo. Sorry. I sure hope you can feel comfort in knowing that there’s people out there that just don’t get it. And importantly your family and friends. When I was first dx, I would leave pamphlets and books on lupus around my house hoping my family would pick it up and read. It’s frustrating enough what your going through and having the sense that nobody is understanding can put a toll on you. I’m sure they’re very concerned and they may need time to grasp everything.
  9. Kiewi5

    Kiewi5 Member

    I’m sorry you are having this experience with your family, and you are definitely not alone in having your family/friends respond that way. I was recently diagnosed with Lupus and I have had a similar experience with certain people in my life. One of my loved ones told me they believed my lupus was caused by my diet. It’s hurtful to feel like our loved ones are placing blame or minimizing our experience. I think that may possibly be their way of coping/making sense of things. Anyway, I’m really sorry you haven’t received the support that is so important at a time like this. I have found this site to be really helpful to me and a great source of information, and there are great resources to provide to those in our lives to help them understand what we are experiencing.

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