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Lupus: the most individualized condition there is

Discussion in 'Relationships & Lupus' started by MrE, Oct 27, 2017.

  1. MrE

    MrE New Member

    I noticed lots of people are having trouble being understood by their significant others. One of the reasons I believe is that the symptoms for lupus are so different from person-to-person and it’s hard for our significant others to understand. What I mean by that is, we know what to expect from cancer. When someone is going through cancer treatment The list of symptoms is small. From what I’ve seen on this website and in the forums, lupus seems to attack every person in its own individual way. Sometimes we don’t even know we are being attacked we just think it’s every day ache or pain or fatigue. It’s very frustrating because it makes me feel very alone.
     
    Soundy likes this.
  2. lazylegs

    lazylegs Moderator

    My husband says he never knows what to expect. When feeling poorly I might carry on as usual, be mad and frustrated or down right weepy. I don't know why it varies so, so I can't expect him to know. He waits for the verbal cues. Communication is key.

    Take care,
    Lazylegs
     
  3. debatat

    debatat Moderator

    I agree with Lazylegs, communication is key. You have to be honest with each other. However I also find that places such as this forum and support groups useful to vent. That way lupus doesn't dominate my life and time spent with my partner is positive and spent on other things.

    Learn to listen to your body and eventually you will recognise the signs that you are doing too much. Pacing yourself is key, prioritise what jobs are the most important and leave what isn't. It is hard to do, but benefits you in the long run. I am still learning, it is so tempting to overdo it on a good day!
     

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