[nyjennyb]

My best friend has been diagnosed with Lupus. She's going on to a specialst for further testing to get more details.

Her mother is in poor health, and her sister has also suffered from Lupus as well as tumors. My friend is single, no kids and in her late 30's.

I just am looking for any advice on do's or don'ts for what to do as a friend.

What kinds of things will she need / want?

What is the most important thing I need to understand as the FRIEND of the person with the disease?

I'd really appreciate your help, and I hope I can return the favor by sharing our stories as we go along in this together. My plans are to part of her fight with Lupus - I just need to know how to help without hurting.

Thanks!

 

[someonesfriend]

Hi,

I couldn't resist replying, because your questions sound so similar to what I wondered too a few years ago, trying to learn more about this disease for the sake of a friend. Unfortunately she and I don't really know each other anymore, for unrelated reasons, but I've kept my interest in lupus that started with her and so still hang around this board once in a while.

I'll let a person with lupus answer most of your questions, but there are a couple things I can say. One, educate yourself as much as possible about lupus (this board is a great start!). Remember that there is no "typical" case of lupus, everyone is different, everyone responds differently to treatments, etc. Also, the members of this board tend to be at the most-affected end of the lupus spectrum; those out living normal lives are less likely to have the time or need to post at a place like this. So don't be too worried by some of what you read around here; there is a large range in the severity of lupus, and what happens to one person is not at all guarenteed to happen to another.

One of the hardest things for me at least was to recognize that sometimes my friend didnt need anything from me, just needed space to deal with things on her own. That may be more the personality of my friend, but I guess it's important in any case to let your friend tell you what she wants/needs at any given time, and remember that she probably doesn't want to talk about her lupus all the time, and shouldn't be defined by it. All of this stuff is pretty much common sense...just continue to be a good friend, which it sounds like you are if you care so much about trying to help her, and be sure to ask her what you can do to be most helpful.

Hope some of that helps a bit, and anyone feel free to correct me, this is just what I've found in my brief time being a "lupie friend" Good luck to both you and your friend!

sf

 

[Katharine]

Hello there and welcome

The answers to your questions may be as varied as the number of different personalities here on the board.

The advice given above about learning about the disease is important both for you and your friend.

Hopefully, because her sister and mother are also ill, your friend will get a little more simple understanding from her family than some would. Of course, that may make her feel even worse not being able to help them as much.

Probably one of the hardest things is the unpredictability of the disease. Your friend won't have any idea in the beginning to what extent her disease will be controlled by medication and even when she hs been on medication for a while, there will be ups and downs. Treatment has greatly improved and many people can go back to leading nearly normal lives - Now, that's me being all happy and hopeful, but, I have to say that when speaking to others the thing that annoys me the most is people who keep saying "Oh well, now that you have medication, you'll be fine soon" and them expecting me to return to "normal" after a couple of weeks.

That is annoying when you have been battling against a disease for years before diagnosis, when you have been faced time and time again with doctors almost insinuating that you've made it all up and when you know that it is not a simple question of waving a magic wand and suddenly getting better.

I would say that "simply" being there for your friend is important. Of course, it is not simple at all. As said above by someonesfriend, she may sometimes isolate herself from you. When I'm feeling bad I do that, I need time to myself. I find being "someone" for anyone else is exhausting and I just want to be alone and be no-one. So being there and "not being there" if you see what I mean.

Practical things are very helpful. I think the things that most of us find so frustrating are not being able to do normal things that others take for granted and also that you may have planned something but suddenly simply can't do it as you're unexpectedly exhausted. So, asking your friend if there's anything you can do practically and (with some people) suggesting that she stop and rest or leave something for another time.

Some of us try and keep battling through the disease and making ourselves sicker in doing so. It is very important to rest when we are tired, to listen to our bodies...probably one of the hardest things to learn and I'm very grateful to my husband who has always been there to tell me "go and take a rest" or who punctuates outings with little rests and not too much walking without making a thing out of it. When we go somewhere no-one else realises what he is doing. I don't feel like I'm being treated like an invalid.

The friends that have helped me the most are the ones who have never really asked many questions but have just understood. If I'm feeling terrible because I know I just can't go out and I feel like I'm letting everyone down, one of the nicest things those people can do is cheerfully change plan and have a different night "in" with me. Or, if I'm feeling very bad, them simply leaving me to rest and going out without trying to convince me that it would "do me good" to go out. Being able to understand a simple "no" without insisting. Helping your friend learn to say "no" if she's not good at that.

One of the most hurtful things is so called friends who only come around if you say you're feeling fine and plaster a huge smile on your face. I am not one to dicuss my disease with others really but I have one or two acquaintances who can't accept me being "quieter" than I used to be and you see that they have simply lost interest in the "new" me. Thankfully I have been lucky to be able to share that hurt and frustration not only with my husband but also with another close friend who is in a position where she too understands. I am also lucky to have very good friends and not many "acquanitances" :lol:

I think one could go on forever really on this topic but I'm afraid my brain has just gone totally blank, so that'll be all from me...

Your friend is lucky to have someone there who wants to help and understand.

Katharine

 

[cad]

Hi there,
I just wanteed to say welcome and good for you for coming here wth the purpose of supporting your friend.
I know you will find this site a really great source of support for your friend and yourself.
Good luck to your friend and you. I hope with treatment things get better for her soon.

Take care

Cassie

 

[Clare.T]

Welcome to the site


A really good friend is a treasure for anybody with a chronic disease so your friend is very fortunate in this respect. It is a true test of relationships.
I moved your post to this section because there are some stickies at the top which might be helpful to you, and in case you hadn't noticed it - existing threads might be helpful too.

You might be able to help your friend in practical ways, such as tasty meals for her freezer, helping with transport, shopping, accompanying her, help with the household chores.

The Lupus Foundation of America's Georgia Chapter is very active.
www.lupus.org Even if we don't want to join in meetings or awareness activities it is useful to know what local help there is, finding the best doctors and so on.

She might be interested in joining the forum herself or simply reading it. You probably should let her know that you are finding out about lupus so you can help her best. Remember that we are all differently affected and often the online emphasis is on the worst cases. I hope your friend isn't one of those.

Maybe she has never used a PC for other than work, so she doesn't realise what a boon it can be. Maybe she isn't PC literate in which case you could help her set things up. Lupus can be very very lonely and the simple fact of knowing there are others who understand what we are going through is a great comfort.

It must be very hard to get the balance between helpful concern and unwelcome intrusion, listening and accepting without question and actually discussing matters, when to give helpful advice if that is possible.

It is easy enough to say don't suggest any miracle cures or alternatives, but it can't be so easy to dissuade the person who wants to try them !

Wishing you and your friend the best of luck!

Clare

 

[sam101360]

HI:

I have a friend like you!

She was very familiar with the disease as her first husband had LUPUS (they were divorced for years already) she knew more what to expect than I did when I was first diagnosed.

We used to live across the street from each other and we moved to Florida, then I was diagnosed. We always kept in touch and travel back an forth to each others houses (hubbys are best buds too) to visit at least 4 times a year.

She isn't here, but we chat online almost daily.

It's the little things, a card in the mail or on email...to make me laugh when she knows I am down. Asking when I have Dr's appts, then calling to see how they went. Reminding my hubby to help out (not that he needs reminding...he's terriffic).

When she comes to visit, she never pushes to do anything, we list what we would like to do wile she is here...she always lists things like chick flicks, poker, having a pig-out-night...while I list the zoos and things we used to do together. This way there is no pressure to do things I am not up to...she lets me decide what I can and can't do without feeling like I am ruining her visit.

She has sent me a cleaning lady for the day (she won a 50/50 at bowling and treated us both...she had one come to her house too).

Mostly its just the little things...sensing when I am distracted cause I don't feel well...and letting me be...but not forwver...she will call the next day or later in the day just to say BOO.

I know it's hard to know someone well enough to be able to read beneath the words...but thats what you really need to do. I am also not defined by my disease and she knows it...Asking how I am is never the first thing from her mouth...usually its interjected in the middle of a story or something else.

Stephanie

 

[nyjennyb]

Thanks for the Responses

Thanks so much for the responses to my post about being a friend to someone with Lupus.

Your comments are reassuring that I have to remember that just because, as a teenager, I saw my great-Aunt pass away from the disease in one of those "worst case" scenarios, this may or may not happen to my friend. And if it does, I will be there for her.

I never had a best friend growing up, and I'm just so scared of what this means for her and for us. I do need to remember that she's the one with the disease, not me.

Thanks again, and I'll keep coming back to this website.

Jennifer

 

[nicky00]

Hi

If you sit a while quietly and imagine if were such a time when you had a virus that sent you to bed or stopped you working for a week.

All the tiredness and gradually getting over that tiredness only to find when you did anything physical or tried to go outside you felt exhausted,dizzy, and a little spaced out.

Remember that lying in bed and your skin hurt to touch even brushing your hair. Muscles felt painful and even joints throbbed and ached.

When you sat up in bed after a sleep it wasnt long before just merely sitting up felt tiring.
At times you felt so disconnected from the world as you had'nt been outside for a whole week or doing things in the house.

Somebody comes to the door and you answer it perhaps in your dressing gown feeling very exposed. If your dressed it feels like you have to make a huge exhausting effort to just explain that your not feeling well.
You cannot wait for them to go away so you can rest.

If somebody comes round to help you out, although you may want things done you dont want to engage much with them as this is draining but you feel an amount of guilt and lack of control over the situation.

Your mum rings and you tellher you are not well and she sympathises but just keeps on about stuff as if you want to sit with the phone to your ear rather than sleep.

A couple of weeks go by and your feeling like your old self and cannot imagine that episode a few weeks ago.
You have a few days of slipping back into feeling the virus or whatever looming and you worry that its coming back and then worry about taking anymore time off work . Its just the tail end.

If you can remember that feeling of how it felt to be overwhelmed by tiredness and exhaustion. Remember the effort of simple tasks.Remember how it goes for a bit and comes back maybe just as bad or not quite so intensly.

That is how one aspect of lupus affects my immune system.

Througout that all the things that present themselves, work,family,commitments, enjoyments,expenses, laughing and being ceative are what makes our lives full. When your ill you cannot take part in the same way if even at all.
Lupus effects me at all levels of my life.
The virus feeling can come and go within an hour, I can just feel pre bug feeling that amounts to nothing, I can be quite literally wiped out.

This is not a part=time episode in my life but an unpredictable long term unknown.

Sometimes I want to talk about how it affects me. How I do not understand why I feel like I do. Sometimes I can see the boredom, indifference in those I thought would be able to listen.
I cry a lot now. Everytime I do I feel weak. Less of who I am. I think people may judge me as Im different.

Those I love say something and I over react. I feel my reaction is further alienating them form understanding me.

I realise Ive been talking so much about me me me I actually want to be able to take my quality of life for granted like I used to and I also understand that its not always good to dwell on myself. I dont know how to accomplish this as the way I feel is mostly unrelenting/

I have a really good week and am so looking forward to going out, I start laughing more. Energy drives me to do some of the things that maKE ME FEEL ME.
My neighbours see me with this renewed gusto and will jusge me for how I can possibly be alright one minute but have this 'lupus'



Im so much better now but Im only writing about a time period of two years.

I havnt mentioned a lot of lupus symptoms.
I havnt meantioned the medications that helped

I havnt mentioned the times I look back as if it were a nightmare.

I havnt mentioned how somebody I know with lupus is seriously ill and its not looking good.
I havnt mentioned about wondering which lupus catagory I may fall into.

Ihavnt mentioned how Ive got back to work part time and how life has taken off .
Ihavnt mentioned how although my life had improved since medication I still have lupus struggles.

Off for my tea now

Hope that gives you some idea although everyones story is unique even though there are common aspects of this disease.

Ithink you will do best if you try to be intuitive and be prepared to not always know what is the best thing to do.

 

[BigSis]

Just had to say
Nicky that was a fabulous explanation of how lupus has affected me and I'm sure many others here, even though I know you were speaking personally.

Excellent discription of the daily yukiness of lupus.:sad:

 

[Sage Hen]

I also, want to say "thank you" Nickey, for putting my feelings physically, and emotionally in to words.

Sandy

 

[nicky00]

Aww
Thankyou Bigsis Sandy and Katherine

Nicky

 

[Katharine]

Now Nicky, I am wondering why I couldn't have said it like that! :rotfl:

Your reply hit the nail on the head. Almost brought me to tears actually.

thanks from the bottom of my heart and the hearts of all the others too
katharine

 

[onetay]

nyjenny,
You have already you care enough to learn about it and are standing by her. I can't speak for everyone here but little by little i lost friends and family. They don't understand and if she is sun sensitive than she will be inside a lot. There are days when she will not have any energy and she will need you but she may also push you away. I felt that I was holding everyone back from living. People with lupus or at least me found it harder to handle what I may of been doing to my friends lives, than what the disease might be doing to me. Just be there and remember sometimes no means yes. The best advise I can give you is be there for her and for you, it will not always be easy for either of you but it sounds like you have a great start!!! There are no do's and don't for the most part just continue to be who you both are FRIENDS. Please encourage her to join the site would love to chat with both of you. Bless you on your journey.
Always here if you need us,
Tammy

 

[CCAREY]

Thank you , for i have a very close friend that has this,and goes through what you just explained.she has told me sometimes she just has to be by herself and needs alone time.i didn,t exactly know what she mean,t and just thought i did something to upset her.but after reading this i feel a lot better,now i know its not me.maybe i should listen better.i have learned alot from this site and hope it will make me a even better friend for her.