My partner doesn't understand

Hi there, I'm 28 and have recently been diagnosed with psoriatic arthritis, I have had problems for about 10 years but only just had a diagnosis. I've been with my partner for 5 years so he has always known I have issues with my back and more recently my knees, however since my diagnosis he hasn't really tried to understand what it means or what living with chronic pain is like. What I struggle with the most is that he doesn't understand that fatigue can be the most debilitating part of this, especially since we have a 2 year old to care for. I'm just wondering if anyone has any advice on how I can get him to at least try to understand what life with arthritis is like?

Comments

  • Al
    Al Member Posts: 169


    Hi and welcome,

    It's great to meet you, you have come to the right place for information and conversation with others like you living one or more forms of arthritis

    There are many here more than happy to share their experience as you share yours.

    This link is for general information regarding any type of arthritis

    About arthritis

    https://www.versusarthritis.org/about-arthritis

    Find out more about the different conditions, treatments and how to manage your symptoms.


    if you have a specific question please post in the Living with Arthritis discussion or for general chat in the Chit Chat discussion. Just join in wherever you feel comfortable

    Al

  • Mike1
    Mike1 Member Posts: 1,992

    I don't have a partner (except my cat) so cannot comment specifically, however, many people cannot understand medical problems which are "hidden". I have 2 sisters, one has OA herself and is really supportive and cannot do enough for me; my other sister is a former nurse whom I only see once or twice a year although she lives less than 5 miles away, she doesn't acknowledge that I have problems despite being on crutches and in a wheelchair, having had to give up work, inability to do lots of things and so on. I would suggest printing off a couple of the leaflets available about your condition and leave them lying around for him to read and/or taking him with you next time you see your GP/Consultant.

  • Hi kj91

    Thank you for posting on the forum. I’m sorry to hear that your partner hasn’t tried to understand what living with chronic pain is about. That can be so tough to manage, as well as having to live with your arthritis and the demands that can bring.

    You describe the fatigue and having a 2 year old which sounds very challenging.  As mike1 mentioned in his reply, many people struggle with medical problems when they are ‘hidden’. He suggested leaving some leaflets/booklets around and taking him with you to the GP, both of which might be helpful for you both.

    I’m also wondering if you could chat to your partner maybe when your out for a walk, it can sometimes be helpful to talk away from home in a more neutral atmosphere. I have given you some links that may be useful for you, and once again could possibly be shared with your partner.

    https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-fatigue/

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/emotional-well-being/

    https://www.papaa.org/ - 01923 672837

    You are very welcome to call us on our freephone helpline: 0800 5200 520, sometimes a listening ear can be helpful.  If you repost on the ‘living with arthritis forum’, you will have more replies.

    I hope this is of some help.

    Best wishes

    Lynda 😊

    Helpline

     

  • Lilymary
    Lilymary Member Posts: 1,740
    edited 18. Jun 2020, 22:11

    Hi, so sorry to hear you feel your partner doesn’t understand the difficulties and pain your condition causes. That’s really tough to deal with, particularly with a two year old on your hands.

    I agree, asking him to go with you to some of your medical appointments may be helpful, and suggesting he reads some leaflets about PA. It can be so hard for non-sufferers to relate to hidden conditions if they are generally fit and well, but I found with my husband (who isn’t one of life’s great communicators, and who is very rarely ill or injured) that sitting him down and having a proper conversation about it, explaining how your arthritis makes you feel, how it affects your life and what you can do, things that are difficult to manage, and even how he can help you, made a big difference. Choose your moment (not last thing at night or when in a rush or distracted), keep it calm, just tell him how your condition affects you. Good luck.

  • frogmorton
    frogmorton Member Posts: 29,402

    I have to agree the fatigue is bizarrely powerful it's like nothing else. If your littley still naps I suggest you do so too. I think sometimes people don't understand and some can't cope with the thought of you suffering.

    Maybe a little bit about not wanting to have to take on more too???

    Talking is the only way forward. There are one or two things you can google, although I personally don't really like them others really do so worth a look. You know your partner best.

    One is 'The spoon theory' another is I think 'The Gorilla in your house'

    I really like Lilymary's idea about taking him with you for your next hospital apt so he can hear what the Dr says.

    Take care

  • Crookesey
    Crookesey Bots Posts: 119

    To be completely honest I have to admit to not being as understanding as I could be, in respect of other people’s problems. In many cases I have attempted to pretend that all is well with people that I love and respect, when deep down I knew that this was not the case. What I think that I am doing is to down play their problems and attempt to make them forget for a while, it’s my way, they most likely understand that.

  • Lilymary
    Lilymary Member Posts: 1,740
    edited 22. Jun 2020, 08:51

    Treating someone who is struggling like a fully functional person can sometimes be helpful, but I feel that only works if you keep in mind that in reality there will be limitations on what they can do, and rather than judge them for it, quietly step in with help when they’ve reached that point. But when friends ask me out for a walk that a few years ago would have been no problem is just depressing when I find I can’t manage it, it just reinforces how bad thing s have got, and I hate seeing the expression on their faces when the penny drops. It’s a fine line getting it right, specially as your abilities may vary in a day to day basis.

    i’m only now starting to realise how fatiguing this condition can be, after a moderately busy morning I was fast asleep on the sofa shortly after I got home, and my OH mistook my inability to do anything as laziness. I think we need to have another talk....... 🙁