I think that many members here have experienced such problems. I'm lucky not to be one of them but as my Mum has dermatomyositis and lupus too, everyone has been rather used to auto-immune disease.
I have had a few problems with colleagues though, of course, that affects me less than family.
It can be very difficult for people not suffering from lupus to understand it. Afterall we tend to, on the whole, look fine! I'm not sure that as an outsider looking in I would have understood myself. Indeed, if I'm honest with myself, although I tried to understand my Mum as a child, I'm sure that I wasn't particularly tolerant :lol: .
When it comes to partners, I know that a lot of people actually take their partner with them when they go to see the rheumy. It helps people see that this is no imaginary disease. We are not hypochondriacs. It also helps them feel involved and not feel so helpless. Some people react badly when someone they love is ill because they can't "do" anything to make them better. It can be so frustrating for them but their way of expressing that frustation is not always very clear to us.
The "letter to normals" posted in the family and freinds section of this site can also be quite helpful (I sent it to all my colleagues for Lupus awareness month ).
Sorry I can't help more. I think these things just take time plus a great deal of patience on our part. It is so easy when we are feeling bad and tired to react very badly to others' scepticism.
Hi, and welcome to this great site. There is a world of information here, at the front of this site and from the people. Yes, everybody, I think, with me thought I was making things up, or something was beginning to be wrong with me in the head. This is because one of the first things you will be hearing is "But You Don't Look Sick", and as Katherine said, they are really right. I even got to the point where I tried an experiment. I went to the dr.s, dressed and with make-up as normal, then the next time I went in with just sweat-pants and a tee shirt and my hair barely comed and no make-up. It Made No Difference!! Now, they still say once in a while, you look so good, and I say, "Thanks-make-up helps. They won't stop, so you have to ignore them,and the idea about taking hubby in, that is a winner,as his belief you want. Good luck and be well:wink2:
Husband and I are not in touch with family on either side. If we were I would have major problems being believed. My Husband's Mother is a big healthy woman who thinks illness is a moral failing. Believe me, if I could improve by thinking positive or whatever I would have done that years ago.
My in-laws felt I was a hypochondriac. This was supported by their GP, who I had once seen and who didn't believe I could have Lupus... too young, too rare, etc. It was made more difficult because we lived together.
A couple of close calls and they did finally get it.
My family knows, but I think they were in denial that Lupus can be serious. They finally got it more and more as things increased in seriousness.
I have had trouble with my family and I know I will continue to have trouble with them because I didn't get a lupus dx, I got UCTD. I made the mistake of making a joke about a year ago about the red rash on my face. One of my sisters asked why my face was so red and I said, "Oh, that's just my not lupus". I'd been tested for that before and it came back negative and the dr. told me nothing was wrong with me. Well, I was in the car at the time with one other sister and my mom and they all jumped on me and were telling me, "You don't have lupus, so why are you keeping this up? All this stuff is in your head and you read too much. There is nothing wrong with you". And other things along those lines. My mother thinks I'm a hypochondriac. When i tell her I have a lot of pain, she tells me to look at my one sister who is in constant pain every day and has fibromyalgia, and look at me (meaning my mother) -- I have such pain every day that I can barely move -- you don't know what pain is. OK.........so it's ok for my sister to have fibro, but not me. And I can't help it that my mother won't go get help for her pain. She has arthritis and needs more joint replacements, but her knee replacement didn't work and she won't go anymore. I'm sorry, but that is not my fault. I've been told by them to get on with my life and quit worrying that something is wrong because it's not. My husband is very supportive of me and knows something is wrong and tells me not to discuss it with my family because it just upsets me.
When I talk to my mom or anyone else and they ask me how I am I just say fine even if I'm in tremendous pain or exhausted beyond belief. It's easier that way. Now that I have a dx, how do I start to tell the truth? I know that if I say, "Well, I have a lot of pain and I'm so tired" my mother will tell me that it's just because the doctor gave me a name to my problem and now I'm making it bigger than it is. And she'll probably stick in there somewhere that it's all because I'm reading about it, so now I think I have the symptoms. How do I say to her, "No mom. I'm just not lying anymore." How do I tell her that I've been lying all this time just to make her happy? That I've been in horrible pain and exhaustion for months, but I tell her what she wants to hear. I have a plan that I'm thinking about if it does go this far, but I'll never be able to carry it out without bursting into tears. Although, maybe it's better that way.
I was put on amitriptyline for pain control (not depression) and when I told her that she freaked out because my dad was on that and it made him a zombie. Well, that med did absolutely nothing for pain or sleep and, in fact, I think it made it worse. She called a couple times and said I sounded distant. After I told her I was off the amitriptyline, she said that was good because it was making me like a zombie and she could tell because I wasn't talking to her like I normally did and I was forcing myself at Christmas to be sociable. I told her that wasn't true, but didn't tell her that it was because I was in so much pain and so distracted by everything that I maybe did seem a bit off. she wouldn't have believed it anyway. Christmas day was very difficult for me because we sang (dh and I are in our church's choir) at our 11:00pm Christmas Eve service, didn't get to bed until after 1:00am (had to get kids in bed and do the Santa thing), and were up by 7:30am. I had a TON of pain and was so tired it's a miracle I didn't leave before I did, but again, I was "lying" to everyone probably including myself.
This could be interesting for me. I may have to go on lying just to avoid the bashing. I like that letter to normals, but I don't have lupus (at least not yet) and, I have to admit it, I don't feel as bad as that person who wrote it. I'm getting there, but I'm not there yet. I don't think anyone would take that letter seriously. I suppose I could edit it to make it fit.........
Well, once again, I've written an extremely long post. I guess I can safely say that I agree with the doctors on one thing -- I definately do NOT have rheumatoid arthritis!!!:lol:
Im sorry you are having so much hassle with your Mam trying to make her understand how bad you feel. It seems to me, from what you have already said, no matter what you say you cant win I guess at some stage you are going to have to accept that there is no point in trying to make her understand and just continue to focus on getting the appropriate treatment.
Its great that you have a supportive husband and his advice about not discussing it with your family sounds good to me. With regard to telling her about your diagnosis of UCTD, perhaps dont build yourself up too much for 'the moment' because it sure sounds like you will be disappointed. If its of any use here are a couple of simple links about UCTD and the symptoms that it presents. You might want to show them to her - you might not. Its up to you.
Your relationship with your mother sounds like a difficult one and one which might just keep 'disappointing' you over and over again. I think all of us at some point want approval from our parents and its painful to us when they are dismissive of our feelings or worries:hugbetter:
Please dont keep spending so much energy of 'making' her believe you. It wont happen unless she wants it to happen so all the energy in the world wont help. Concentrate instead on getting to a point where your health is better through treatment and you can function better with your husband and children.
If you continue to push yourself to the point of collapse in order to be able to say 'I told you so', you are the only one who will suffer.
I wish you the very best in the middle of this complicated thing called 'families - and how to survive them'.
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