Getting people to understand my pain

Hi guys Im new to this online community but need some help. I got diagnosed with Lupus a year ago and found i could cope pretty well as it wasnt ipacting me so much. Ive now moved area and changed hospitals which means having to change specialist.

They put me onto new medication and I am in constant pain. Im ok for a few days and can get really bad flare ups lasting 2-4 days. Ive had to quit working and it also affected my longterm relationship. I have tried to get my partner to understand but he just thinks im faking it as i look fine on the outside and having already lived with it for a year and having held down a job he just thinks im being lazy.

Please help Im at the end of my tether as now my home life has become a source of stress as he broke up with me but due to circumstances we still live together. The stress is making things worse too and I dont know what to do.

I have noone else to turn to having no family here as I came a very long time ago with my mother who sadly passed away 7 years ago.

The depression is really taking its toll too and friends are quite far away after having moved. Any advice would be greatly appreciated.

Billie

8 Replies

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  • Hi Billie

    So sorry to read of your health and private life problems. Lupus is a tough illness to have as our suffering is hidden!. We can look so well!.

    As you've had your medication changed by a new specialist and got more pain you could see if you could get a clinic cancellation and go back to Consultant and tell him what's happened. Are you due to see him?. Taking your partner with you might help him understand your illness better. It's tough you've moved missing friends now your relationship has gone wrong!.

    Good luck X

  • So sad and sorry to hear about your troubles, Billie... My husband can be a real jerk sometimes so I can appreciate the difficulty your having - mine won't come to dr with me, but has told me he suspects I'm a hypochondriac because there's always something that I'm complaining about. Other times he's quite supportive, even telling me he's read about it and understands, but often I feel alone at home (as far as the lupus goes).

    I've found the online groups like this to be helpful, and I've a friend who is kind of my mentor for managing a chronic condition, and I am blessed to have a sister who I'm close to...

    After 10 years, I do still work - but I was off for 18 months when I first got sick... I don't tell very many people, and I definitely don't have as many friends as I used to but I've kept the special ones, even those far away.

    Good luck finding strength and arriving at your new normal - know you're not alone.

    As far as your partner goes, I think we (you or me in my relationship) have to weigh the give and take in it, and figure out if it fulfills us or drains us... Mostly my guy makes me happy, but I know there are days when he doesn't support this part of me and I feel I'd like to have a go at life on my own, because bad days are really hard and if there is more stress than support at home life really sucks and it's just harder to manage this stupid disease.

    I wish you all the best, health wise in particular...

  • Same as my situation. My husband can be really supportive and helpful at times. Other times, he is a pain to deal with so it does make me feel alone and frustrated. I haven't been able to work and he is supportive in that area so that helps. Maybe if boyfriend can at least read as much information as you can get on Lupus, he might understand a little better.

  • I'd really try to get the medication changed. I was put on medication at the start of this year that many people don't have a problem with (azathioprine), but it completely incapacitated me and I'm still off work recovering. I was only on it for five weeks and had to ignore my first consultant who wanted me to stay on it. My second opinion Dr agrees that I'm hypersensitive to it, and for now, the best thing is just to stick with the steroids. My bloods are improving and I'm gradually feeling better. I'm just glad I had lupus for a long time before they diagnosed it, as I've learned how to manage it pretty well myself and when a Dr says "It's the lupus, not the medication" I know he's talking out of his bottom!

    It's a very difficult illness to manage and relationships with others are always going to be made harder by it. You do find out who you can count on though, which sometimes can be a blessing! I'm on a low dose of citalopram which helps me manage depression that came on following a load of miscarriages. You can get it in liquid form which I find useful as I can take exactly the right amount to balance side effects against the positive ones. Some GP's aren't aware it's available in liquid form so get them to look it up if you ask for it and they look at you blankly! Antidepressants aren't always needed and talking therapies or a bit of counseling support can be good too. I can also recommend Relate for relationship issues. Help is out there and with our illness we often need it!

    Good luck and best wishes for the future!

    xxx

  • Hi.

    I'm gunna speak in more general terms, as aposed to commenting on your ex- boyfriend.

    I've had SLE for 33 years and have learnt that with the people in your life you have little choice but to have contact with, those who score a wee bit too low on the empathy scale - the first step is to clearly recognise who you are dealing with. Look for signs like them being fond of blaming the victim eg. " youre a hypercondriac - neurotic - lazy - malingering - attention and or sympathy seeking - (that last one I actually received from a GP when merely trying to covey my medical history !)

    When you realise 'what' you are dealing with - for whatever reason you can't rid this person from your life, the best method of dealing with them is to remember this simple phrase: 'Don't complain, Don't explain'. You will be amazed how little they will notice the difference. (ie. Don't care)

    It actually works - and helps you get the appropriate amount of emotional distance you need from these types.

    Unfortunately on you're lupus travels you are always going to come across moral imbeceles. Unfortunately there's a lot of them about, and nearly all of them - in response to you saying eg. Ive Just been to the Doctor due to a life threatening episode, will say something like "Oh, its been four years since I had to see a Dr"

    That's why I would stress that as you're at that horrific hard point where you have to socially start over - you have to be way way way more discerning about the people you let into your life. More discerning than people without health problems. And even with this you still have to put up with a normal run of the mild idiocy.

    This kind of thing is a major issue with Lupus, and you are not alone in this type of experience. Its an issue that definately doesn't get enough academic attention.

    We need our own specific set of life skills.

    Wish there was an info pack on it.

    Just remember, things will get better.

    x.

  • AMEN!

  • I feel ya. My husband goes with me to the dr an still says it can't be that bad we all hurt its part of getting older lol I'm 34 an feel like I'm 100!

  • I feel your pain.

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