Scunnered with others lack of understanding?

Hi. Im being treated with Hydroxychloroquine and due to start on sulfasalazine soon as still very sore. Have cocodamol and NSAIDs for pain, but the later make my hypertension worse. My problem is my other half thinks its 'stress related' and i shouldnt be taking pills at all. He makes me feel like im faking and others in family are demanding and do not give me any help. Im thinking of stopping all my meds and seeing how it goes. I feel useless as it is when i am not able to do things for myself so these comments have made me feel awful. :-(

6 Replies

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  • Trust your instincts about your own health, not medical opinions from non-medically trained people.x

  • Oh dear.others find it hard wen they can't see the problem and we lupus sufferers have hidden husband thinks I should just get on with it.I do only what I can each day and to tell with the rest.eventually they 'll see we are not only unable to do the boring stuff but the things we use to enjoy.if you keep struggling on they will think it she'll get it done she s just feelin lazy/having off day.I don't think you should stop your meds .speak with your doctor first.pls ignore the negative people in your life.

  • It's hard to convey to others just how difficult it is living day in day out with a chronic illness such as Lupus. The Spoon Theory was designed for people in your shoes. Perhaps you need to broadcast it as I believe there's a video now too. I think someone on the NRAS HU has posted a link. I'll see if I can find it but meanwhile just google it and then perhaps print off a few copies and hand it ti your partner and other friends and family to read there and then if they are being insensitive?

  • I have to really thank you all for your kind and encouraging replies, you have helped so much and made me feel someone else understands. Thank you x

  • Honestly most of the posts on here are about the lack of understanding from Docs and family/friends. Lupus is not in the public knowledge - there should be more publicity. I gave up telling people and spoke to Docs and people on here. I go to bed if I am feeling rough and to hell with it. Hydroxy takes a few weeks to really kick in I found. Lots of Docs are not too kind either, I felt like a hypochondriac - I was put on Sertraline for stress and it really worked (low dose antidepressant which I thought I would never ever take but....) You have this site - you are not alone.

  • Hi Scunnered13,

    I'm sorry to hear that your partner and family are not understanding your diagnosis and are not very supportive. Have you given them any information about lupus to read? We have a booklet called 'Caring for Someone with Lupus' which you can view and download here - we also have physical copies that I can post if you need them. Just send me a private message or email with your name and address.

    In the past I have heard it sometimes helps partners and families understand if they attend a lupus support group meeting. It allows them to meet other people with the condition and their partners and see that it is not just laziness or stress.

    Please don't stop taking your medications unless you discuss it with your doctor and do it with their approval and supervision.

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