No support

Not sure if this is a normal feeling to have or not but I feel like I have no support with my pain and illness from my boyfriend what's so ever. We have been going out not for a year and half and a year of that I have been very ill... I am in constant pain daily, but jut don't feel like he actually understand what I'm going through and how bad our illness is.. I do say this to him but then it just goes into an argument. I do live with him but rarley see him his constantly working, some times over night or if his not working he will be out with his friend at the pub, which obv gets me down because I'm constantly stuck in the house and can't do none of them things he can.

Don't know if I'm just wasting my time and should just let him get along with everything or try and work it out.. I just feel like a huge hypocondriac when speaking to him how much pain I'm in.

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  • Hi, I can very very much empathize with your lonliness and how lost you must feel. I have been dealing with some kind of serious undiagnosed auto-immune/lupus type of health issues for the last year and a half. I live with my fiance who I have been with for 5 years and my two children. I have not been able to work since I started having these terrible flare ups, and he has been working, finishing his masters degree online, and financially supporting me as he pays for all our rent, utilities, and other things. He is a very decent man, and not a lot of people would do that for a woman and her two children, especially considering most of the time, I am unhappy, in pain, and constantly depressed. This being said, he is by no means a sensitive man...and there are many times I am left alone crying, feeling completely lost and hopeless, emotionally yearning and needing him, or anyone to just be there for me. This often goes completely disregarded by him for things like "im too tired" etc, and will just go to sleep when I feel like I am desperately reaching out for him. It's times like that I always think 'god!! maybe i just shouldnt even stay...maybe hes not the man for me'. It feels terrible. However...I have had many a bad relationship in my life...and in our history have done some really terrible things that hurt him and shouldnt be forgiven. He puts up with a lot. I am lonely, and highly emotional...I imagine most people dealing with any kind of illness is. Now, my fiance doesn't go out with his friends like yours...but I used to all the time just like that when my fiance doesnt drink. I can see both sides here I feel like. I honestly don't come to give any great problem solving wisdom or answer to what you should do in this situation. All I can say is...it's just so incredibly difficult being ill, being in pain...and it is very hard not to let it completely consume you in self pity and anger. You're mad at yourself, mad at life, and feel like your body has completely betrayed you. Don't let it consume and blind you. Of course going through this is a terrible thing, but it IS hard for men especially, to not really be able to understand it. I feel so much like my fiance thinks Im just a hypchondriac as well, despite the obvious physical reactions (like when my feet will swell 3x their size and turn bright red) that he can see for himself. Have you tried just talking to him? I mean a real...calm, mature conversation about this. How does he feel about it all? How does what YOURE going through effect HIM? I know it feels like all attention and concern should be on you because you are the one dealing with the pain and misery right now...but when effects us, effects everyone around us. He might surprise you and open up with feelings you didnt know he had...or he might completely dodge the conversation and act like an ass. Either way, it might help you really see the situation for what it is. Maybe this isnt the guy for you, but you won't feel any better sitting alone, wondering about this and if it feels right. Im sorry you feel so lonely and lost...just know in a sense, youre not, because so many are also alone and lost...together you can not be so alone :)

  • Have you tried stretching and gentle exercise in the morning? I am unable to walk when I get up but am much better after doing stuff.

  • Babe, I think you should let him know it's not working and to be honest perhaps it's too much for such a new relationship .

    I'm with my partner 28 yrs and we are finding this hard.

    I hope you sort it out. X

  • Oh Leanne, I really feel for you.

    Before I started developing SLE/MCTD symptoms, I honestly didn't realise that people are left to suffer pain for so long without effective medication! I had no understanding of nerve pain, i.e. pain that isn't helped by anti-inflammatories + co-codomol. Fortunately I've had no problems with hydroxychloroquine so am hopeful that I'll start to feel better in a few weeks. I've also been prescribed amitriptyline on a low dose for nerve pain - this should also help, fingers crossed. The fact that you had a reaction to the anti-malarials and are now in 'limbo' is probably adding to your despair. I'm sure you're rheumy will have some options for you at your next appointment. Try to keep a record of your pain and how you're feeling in preparation for this.

    I had a conversation with my husband last week after feeling as though he wasn't supporting me and didn't understand what I was going through (although I do have friends and family who are supportive). I think his suggestion that I go to boot camp with his sister was the tipping point! Turns out it was upsetting him to see me in pain and not be able to help. Funnily enough, understanding this has helped me to put on a brave face (when possible), or at least start talking and joking about stuff not related to my disease! Finding ways to have fun again (even though you're in pain) might make things less tense and help to open up a proper conversation about the type of support you need, physical and/or emotional.

    Do you have anyone else to support you, particularly while you're going through the initial stress of diagnosis and exploring treatment options? Don't forget that we're always here!

    x

  • I had to give this a lot of thought and consideration before replying; your mileage may vary, and I invite you to sit with your inner feelings (even the scary ones!) before making a decision.

    I think when one has a chronic illness and is in a relationship, we have a tendency to 'settle'. There's a mentality which makes us feel that we're such a burden, we're lucky if anyone has any interest in us at all. "At least they care" is how our internal rationalisation runs - even when there's every indication people maybe don't care much at all. For me in my marriage, it was partly due to finances - he earned money and I wasn't capable of doing so on my own, so leaving the marriage was a terrifying choice. How would I survive with zero income? How would I raise a special needs child on my own?! And it WAS hard, true...but when I finally did make the decision, I was able to look back and realise I had been settling. "Well, I know he's sleeping with other people, but at least the bills are paid" isn't a good rationalisation for a relationship.

    Life is too short to settle. Especially if you're ill.

    I would say if you've already tried to discuss it with him, not just how you feel, but how HE feels too (men who feel helpless tend to run and hide instead of admit it, I find) - and if all that results in is arguments and knee-jerk reactions, then yes, I'd say maybe it's time to call it quits, and I know how frightening that is, believe me, but it's better than being miserable. If you're worried about being alone...to be honest, you're alone NOW. He's not home, he's not there when you need him.

    I can honestly say it's worse to be lonely in a relationship than alone entirely. I had to shed a lot of old skin and reprogram my brain after my marriage - I had taken the Grateful Burden role so entirely to heart, I needed to scrub my soul clean of it. You're NOT a burden, you don't need to be merely GRATEFUL for being financially supported, and you DO deserve better.

    I wish you strength and courage.

  • Thank you so much... Exactly how I feel... Just a very hard desicion to actually make x

  • I know it is - I had a feeling you already knew what needed to be done but you were afraid to do it. It's ok. If you need permission, allow me to give it to you. You have permission to want more. You deserve it. And you'll be strong enough to weather everything that comes after, come what may.

    I wish you courage and strength.

  • I have been married 30 years and I not only feel like a hypochondriac in front of my husband but Docs too! I think the feeling of loneliness is very common with this illness also, I have seen that word so often on here. Men find it difficult to process things like this. It is only when I am really bad my husband makes an effort in any way. I have been on Hydroxy for 6 or 7 weeks and feel heaps better, so hope you get prescribed soon. It is a young relationship you're in and I would suggest that you take him out to neutral ground and put it to him that you need more support and that you understand he has his life to live and he might need to find someone who isn't ill. His response will tell you all. You don't need that stress on top of Immune malfunction, you will be able to concentrate on yourself. Good luck.

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