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Please help! Family calling my hypochondriac

Discussion in 'Relationships & Lupus' started by Jacqueline leady, Mar 30, 2016.

  1. Jacqueline leady

    Jacqueline leady Recently diagnosed

    I'm so sad. Recently diagnosed with lupus SLE and rheumatoid arthritis but still haven't seen my rheumatologist. My entire family has been ignoring me for two weeks since I found out. I called my mother and she told me I wasn't sick and that I am a hypochondriac. I told her that my doctor said I had it and that a rheumatologist needs to look at me because there seems to be a more underlying condition (from my test results) also that it is not her specialty. I haven't been able to work for three months, I have had a flare since then and it's so bad I literally can't get off the couch most days. I also have a special needs child at the age of 9 and no one to help me care for him. He specializes in extreme restlessness and destruction :/ I called my sister and tried to reason with her and she said that I am a hypochondriac and that I can also be sick and a hypochondriac! I asked her how am I one and she said because I say my teeth are almost gone and I am going bald! She said I'm clearly not! I showed her pics of my teeth, all missing in the back in the bottom (the ones you chew with) and my hair total bald spots on both sides of my head. She said pictures don't do justice! This made me cry for two weeks. No one understands how it feels to lose these things. I called my mother one more time and tried to just talk about normal things, she flipped out on me for not calling my other sister before her minor outpatient surgery. I told her I was in the hospital because my throat and tongue swelled and I had a hard time breathing and that she hasn't even had her surgery yet and I would have asked her how she was after! She said I was selfish and that life isn't about me. She also said that it was extremely rude of me to block her on fb before her surgery. I told my mom that I turned Facebook off to avoid stress and I didn't block anyone! She didn't take anything I said and just kept yelling at me. I had to block her. I flared up so extremely bad I went back to the doctor for swollen collarbone and neck. No one has called me or even offered to help. Then I got on fb to check on my sister and she posted that our Mother had come to her house did all her laundry all her dishes and watched her daughter for the whole week! She was working the day after her femoral hernia surgery! I'm so stressed. I don't know what to do. I feel like giving up. I can barely take care of my son and I don't know any resources. Please help!
    Last edited: Mar 30, 2016
  2. s_warrior89

    s_warrior89 New Member

    This really saddens me... First off let me start by saying you have to be strong for you and your son I have two sons that drive me up the wall and I could even begin to imagine how difficult it must be for you having a child with special needs... Maybe u should ask your family to come to dr with you so that they can explain things to them... A lot of people with lupus go through problems with their family not really understanding what's going on with their bodies... Hang in there I'm sure things will get better for you... I'm praying for you

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  3. s_warrior89

    s_warrior89 New Member

    You should check out some government programs that may be able to help with sending a nurse or something out to help with your son

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  4. Jacqueline leady

    Jacqueline leady Recently diagnosed


    Thank you for the advice! I'm glad I found this page! It's nice being able to tak to someone, especially someone who understands!
  5. Jacqueline leady

    Jacqueline leady Recently diagnosed

    I have been trying to with his aid, she doesn't really know how to do anything until I see my rheumatologist on April 11th. The problem is that I'm losing my apartment right now :/ it might be a good thing as long as I can find somewhere within his school district.
  6. s_warrior89

    s_warrior89 New Member

    I'm so sorry to hear that... I know this must be a stressful time for you and that's not good because stress can make your symptoms way worse... I hope that your family has a change of heart because having an support system in times like this makes a big difference

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  7. Jacqueline leady

    Jacqueline leady Recently diagnosed

    Thank you so much! You're right about the stress! I literally cannot talk to anyone in my family right now. My symptoms have calmed down though since I've ignored them. My birthday is today and my mom invited me to a party for my birthday this Friday. I don't want to go. Any ideas? Should I go?
  8. s_warrior89

    s_warrior89 New Member

    Happy birthday!!!!! U should totally go there may be an argument or two but u can't give up on letting them know what your going through with your health

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  9. Jacqueline leady

    Jacqueline leady Recently diagnosed

    Thank you again ;) I'm still not sure :( I know I want them to know I still love them but it really scared me, the way they have behaved. I feel like if I go it's going to be completely awkward. They probably just want to tell me how I need to stop worrying about it and that I'll be fine and that it's not a real life changing thing like everyone else I know :( I really wish more people could understand how we feel having lupus...or any other autoimmune disease! I'm still so mad too and so upset that they didn't even try to understand or help me. They just called me a liar. It's so hurtful.
  10. x_claire_x

    x_claire_x Moderator have had a rubbish time.. I hope your Rheumy appointment goes well so that you can get some treatment and advice. It would be good to get one of your family to attend with you. Start preparing for the appointment...write a daily diary of symptoms and pain grade them 0-10...describe how they hamper your daily socially, work, lifting things, driving, blow drying hair etc etc.....also note the weather each day and what you are doing....sometimes there is a pattern to the pain. I always find I get payback pain 24-48 hrs after I have lugged in the heavy shopping /gardening/ vacuuming etc etc.

    It might be helpful if you took copies of 'the spoon theory' for your family to read through....sometimes it helps them understand you have a limited energy ration is hard to understand unless you are dealing with autoimmune disease , it may help them realise that however normal/good you look..your body is attacking itself every every day it is like having flu or illness because your body is working so hard.

    It is a pity you don't have anybody close who is dealing with this too...sometimes it is good to have an advocate. Glad you have found us, at least you know these reactions are quite common and very tricky for all of us to deal with.....Try and stay calm as much as possible as Stress is huge for exacerbating everything.......................speak again soon, Claire
  11. Jacqueline leady

    Jacqueline leady Recently diagnosed

    Thank you so much Clair! That was very helpful advice! I've started a diary of all my medical problems and when they started already! I didn't think of the weather! I always find I get a severe headache and my ankles and wrists hurt really bad right before it rains! It is like I can predict the weather haha. Thanks for the spoon theory idea, that's a really good idea. I just hope they don't roll their eyes and make it seem like I'm being a hypochondriac over that too :( I guess there is no harm in trying. I've told my friends about it and they were really understanding.
  12. keebler

    keebler Moderator

    Hugs Jacqueline,
    Some people if they cant see anything wrong they don't think a person is sick. If only they had x-ray vision then they could see how lupus is going after us.
    Im sorry you are not getting family support.
    I understand about your special needs son. I had a daughter that was special needs.
    Take care,
    Choosingme likes this.
  13. MrE

    MrE New Member

    I wish I knew. I got on for the same reason. Lupus is frustrating and can make you feel alone because people don't understand what it is.

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