Just need some support from people who understand!

[Melody2]

Hi,

I don't want to complain, but I sure could use some support from some fellow loopies and others who appreciate just how hard autoimmune diseases are. I have one friend that tries to relate every little thing to how I feel. I used to let it slide as I figured it was her way of understanding...for instance she was a little dizzy with her pregnancy and said she assumed that was how I was feeling, and the fatigue she started to have she assumed was the same type of fatigue I feel. I appreciate her trying to understand, but the problem is what I feel IS different, much different and much worse...I know because I can't carry on as she can. She assumes I'm 'giving in' to fatigue etc. I know what regular tired after a long day is or when you're run down...and I know what lupus fatigue is. Entirely different.

Then just recently I have been having a really difficult time with brain fog and pressure in my head. My lower right leg and foot have gone numb and I am experiencing some really difficult problems again. I have CNS lupus so have these bizarre things happen. She actually said to me that it was the ergonomics of my computer and not to assume everything is lupus. Hello! I am not at my computer very long, and even so, I understand how ergonomics work, and know what it feels like if you're not set up correctly, headaches etc....but what I experience is so incredibly different and is not in the least bit related to my computer as it occurs with or without computer use! For people who have lupus, there is no mistaking when it is the trouble maker. I know there is no way people can understand if they don't have it, but I really don't want to try and make her understand because though she says she thinks she knows how I feel, she actually doesn't let me talk about how I really feel and what really happens.

It's also painful as I have been advised against having children at this time until I am in better health...it is especially important with my antiphosphlipid antibodies on top of it to make sure things are ok to proceed. She keeps telling me I'm the one making the decision and that lupus would not be riskier than any other pregnancy. I appreciate that pregnancies can experience complications in anybody, healthy or otherwise, but I specifically have some heavy health concerns to take into account at the moment and have been advised by my specialist to wait on the decision to have children. It's very insensitive how she is carrying on...and she also keeps saying how there is a stigma for people who cannot have children. It's absurd! The reason I have continued to maintain relations with her is because I have known her now for 14 years, and they weren't all bad. The past ten I have realized more how she is toxic at times, but you know how it is when you've been friends for so long. It just upsets me that people can't accept that I don't feel well, I can't do everything, and no, I'm not willing to complain about it to affirm their belief in my wellness. I look well when I see them because I don't have physical signs of my disease. But I pay for every outing I do later...it doesn't mean I'm faking. Before I had real complications from lupus and even discovered that I had lupus, I never questioned anyone else I met who had health problems. I have always been someone to take someone at their word and to appreciate that not all pain and suffering is visible. People don't like to broadcast what is really going on, but it does not mean it's not there. I would never dream of minimizing someone's experience by trying to compare it to mine or anyone else's or suggest that they aren't being strong enough. Lord, how I have heard her complain when she's had the flu! Yet, I can feel like I have the flu quite regulalry...I have had the flu, I know how it feels...and I have felt like I have the flu even when I don't. You all understand.

I don't know if that made sense, and it certainly turned into a longer rant than I had intended. I haven't started a post in awhile, I prefer to try and be positive, but I think right now I just need some support from you wonderful people who know exactly how I feel. No justification, no suspicions. Just understanding. It's wonderful. It's what I need as I'm starting to feel blue and misunderstood.

Take care everyone. Big hugs to all. Thanks for giving me the space to vent.
Melody :luck:

[bugsy]

:wave: :wave: :wave: Hiya Melody

Big gentle hugs :hugbetter: :hugbetter: to you too - Yes we do understand how you are feeling and i know just what you mean about people not understanding how we all feel, as for friends trying to compare our illness with their own is a joke unless they have lupus - one of my friends as got asthma and she is constantly telling me how she understands how i feel because she as to use a steriod inhaler - don't get me wrong i feel for her as asthma can be quite bad but she smokes so she can not suffer that bad in my opinion. Another one is my sister in law (i love her to bits) but she is always complaining about how much her varicose veins are hurting and tells me that she understand the pain that i am in from having deep vein thrombosis in both legs, the difference is she had her varicose vein removed last week!!!!!!

So Melody i totally understand how you are feeling and regarding the children situation - please take your doctors advise on that, i can not have any children so again i know how you feel about that too.

If you need to talk or rant you should join us in chat for a good old gossip - take care - love and hugs :hugbetter: :flowers: :hugbetter: :flowers: XxX jo XxX

[confused1]

((((((((( Melody ))))))))))

Big hugs to you too. This is the place to vent. We all understand. Most of us have experienced the same song, different verse. My sister hit me with a very similar sort of thing yesterday.

Here's the thing: I believe mostly people don't want to believe how sick we are. It threatens them. Maybe they love us so much that they must be in denial about our illnesses. Maybe they are threatened because if it happens to us, it could happen to them. Maybe they are just pain stupid and thoughtless.

But in the end, those who haven't experienced chronic illness and pain can't really understand and empathize. And many, many people have some compulsion to minimize anything they can't understand.

Wish I could give you a snappy comeback or something that would educate your friend. I don't think it's possible. The only thing that would convince her would be if she woke up tomorrow with lupus. God forbid. I'm sorry you have to listen to her insensitivity. Please don't let her hurt you. And when you can't handle it, just come to chat and howl. It saves my sanity often and gives me a way to laugh off the tough stuff.

Love, :coffee:
Sunny

[jude mack]

Hi Melody :hugbetter:

I am sorry you are going through such a tough time with your friend, but I think it is time to sit her down and give her the straight facts, or show her some of the posts on this site.

If she continues to be insensitive, I think it would be time to reconsider your friendship as she is obviously making you uncomfortable, and adding some major stress with her comments.

You have to consider your problems first, not what she seems to think about
them. You are always the best judge of you and how you feel. I have had to give up a couple of friends and I know that isn't easy, but your health comes first.

Maybe if you can get her to really understand you, and quit analyzing {sp} you
can still be great friends. I really hope things work out for you. You Take care.
Jude :flowers:

[ladyjane]

Vent away!! I think most people on this site probably know at least one person like yyour friend, and don't make the same mistake I made, just because you are remembering the good times with your friend. If she is now annoying and being self centred then she is draining your little energy and you are worth more than that. Her problm is that she is self centred and will never fully understand like many people but in my opinion she doesn't really want too as it doesn't involve her. Real friends would put themselves out for you, believe me I considered myself to be popular and understood at work UNTIL I have been off work now for 4 months with this wonderful disease only to find out who my real friends were and after visiting them today I know longer feel that I fit in with most of them and most of them don't believe my circumstances or illness.
One xample is I am a single mum, recently divorced with three teenagers and a four year old and a mental ex husband. Living on sick pay only and miserly maintenance and yet two people asked me if I was going on holiday. I just had to smile and say know I struggle to survive on a normal month let alone holiday too, (havent got the energy to pack either). But as these people all go abroad twice a year with their hubby and children they have no idea about having three years without hols like I have done. Then they scowl at you for being off ill for four months.
If I was you I would slowly distance myself from your friend, only see her when you want to and if you have to be blunt with her in the end then do so. Good luck.

Julie :flowers: :wave:

[sunladyb]

:wave: Melody

Just sending you gentle hugs hun :hugbetter:
Take care look after yourself
Love Dawn :flowers: :love: :hugbetter:

[teabellyjules]

:wave:

Maybe just maybe the answer could be to have a ban on talking about 'health' to each other. I know this could be very hard to do and I know that you should be able to talk to your friend about anything but it seems like, the others have said, that she doesn't understand and maybe never will.

Sending you lots of :hugbetter:
Jules
XXX

[Melody2]

Thank-you so much for your replies. I am actually feeling very emotional reading each one as it means so much to have all of you to turn to. It's interesting how someone can know someone in their everyday life for years yet find so much more compassion and understanding from a group of wonderful people who I haven't met in person. You don't know how much you have helped me today and given me back some of the emotional strength I felt slipping away. :love:

You have all offered me great support and reassurance in how I feel regarding this situation. Some good ideas as well. I think it will likely be best if I gradually distance myself from this particular friend. I do avoid discussing my health with her but I think if she does say something that minimizes how I feel again, I'll just pleasantly set her straight and move on. If she chooses not to support or believe me in the extent of what is going on then I can't do anything about it. It's just sad, you know. I wish things could be different. I wish it wasn't so hard for some people to understand...I just think acceptance and love is easier, but that's not everyone's way.

Thanks again. You have no idea how your replies have made me feel today.

Much love,
Melody :luck:

[gretchenb5]

Melody,

I'm glad you've had the chance and place to vent about this "friend," and I'm glad you've felt supported by everyone. Like most have said, I think we all have a friend or family member like you've described.

I, too, have a friend very similar to yours. 2 years ago, when I started getting really ill, she broke her ankle. I went to her house every day for 2 weeks to help with her 3 YOUNG children ALL DAY (as her husband was at work). I would go home and literally collapse (you all know what I mean -- couldn't eat, wash up, etc.). And guess what? Eventually I wasn't able to help at all because I couldn't move! And she just could not understand -- I LOOKED fine!

Anyway, I did distance myself from her, slowly at first. That seemed almost torturous, so I talked to her. She didn't get it. So I wrote her an old fashioned letter. Didn't hear from her at all for about a year and a half. When she eventually contacted me again, it was the same thing all over. I've been in and out of the hospital for the last 4 months -- she just called the other day, and when my husband told her that I was too tired to talk, she was miffed!

You really learn who your friends are when you are chronically ill. Thank goodness I have many -- and I'm sure you have many, too. You know you have them here ;)

gretchen

[rwb200]

It can be very hard to understand what you can't feel and some people have a way of saying really stupid stuff.
There is no way that they can understand just how you feel and no way you can explain just how you feel.

Best thing I can say is that we have to make allowances for ignorance.

look at the bright side you can take medication to help Lupus nothing helps stupidity.

[northstandgirlie]

:wave: Hi Melody,

I don't know why people do it. Being friends or family, you would think they would know you better than anyone, instead their comments often come over as patronising, making you more irritable. :tantrum:

My husband has always been reasonably understanding with illness, as I have had endometriosis for 13 years and have often been in severe pain. But it seems that since I was diagnosed with primary Sjogrens his empathy meter has gone offline. When I told him what the rheumy told us to expect he just said 'oh' and if I say my joints are aching and I'm really tired, he says "I'm tired too" or "Oh yes, my arm's been hurting too". No offer to do the chores, the cooking, etc when all I need is to be flat out on the couch. :sigh: So I can certainly appreciate how your friend's comments make you mad.

When I found the site and the message board it meant a great deal. The people on here inspire me and it feels like I'm not alone. And now you know that you aren't alone either. :whisper:

Take care Melody and continue to bite your tongue - they don't know their words hurt and frustrate you. It's their ignorance not yours.
Rita

[Melody2]

Thanks for the replies, it means a lot to me. rwb200, I got a chuckle out your mention there are no pills for stupidity. :P Bugsy, thanks for sympathizing with the baby situation. We're the only ones out of our friends now and people keep mentioning about 'when' we have kids though they know the situation...I guess they don't really understand 'when' possibly could be 'never'. We just take it one day at a time and try not to think too far into the future. I share your feelings.

Thank-you everyone for sharing your support and stories. I definitely feel much better again now and feel better equipped once again on how to handle these sorts of frustrating comments and emotions.

Take care, :love: :love: :love: to you all.
Melody :luck: