I have a husband who is supportative only by driving me to the monthly benlysta infusions which is 2 hrs. away. I keep a Wellness Journal and that helps. Faith in God and prayer helps. h
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Iāve been there. It was very bad before I was diagnosed but still knew I was sick. After being diagnosedā¦ Things have gotten a bit better but I still deal with some people that have that attitude. The worst is a fiend who is an old friend that I spoke to several times a day, listening to her cry about her marriage breaking up. This lasted for 3 years. Then when I get sickā¦ Iām āsubmitting to itā! I let it slide for months but could tell her attitude about me had changed. I used to be so drained when I got off the phone from talking to her about her failed marriage but she canāt listen to me. It turns out to be a blessing because Iād still be listening to her problems without being allowed to share mine. I feel a relief. I donāt cringe when the phone rings. I donāt need anyone in my life like that. Neither do you. Iāve lost a couple of āfriendsā due to being ill and not up to doing all the things we used to do. Oh well. The only ones that matter are the ones that are still in my life now. And since Iāve gotten treatment and all my drās in order, I have much less to talk regarding my illness so too bad for the people who wrote me off! Lifeās too short. Donāt waste your time with people like that. Sheās already proven sheās a fair weather friend. Sheās not good for you.
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You do have to take care that you don't let your illness define you You are a person first and since this illness can be so pervasive it is easy to fall into the trap of your illness being youand invading your very existence. As a long time critical care nurse it actually helps me when I was having the poor me's, justified or not, to remember all the train wrecks I have taken care of- Lou Gehrig's disease, end stage multiple sclerosis in a 24 yo woman with a young child having to be placed into foster care, osteosarcoma and 6 months to live and having to find homes for your 4 children, the 25 yo newlywed just dx with stage 4 lung cancer and his young wife is pregnant- the list is endless. Then in spite of all my aches and pains I remember how much I have to be thankful for-
Went for ice cream last night with 6 friends. One asked how my sleep study went and I told them, then I changed the subject. It seems 2 of the guys has the C-pap machine also, but I still changed the subject. I don't want anyone to feel sorry for me. They'll end up not liking me.
Cindy
Hello, Don't feel bad , hold your head up and be who you are Living with LUPUS...Beverly L.
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man mountain mamma, you hit the nail right on the head,,,,,people just do not believe I am sick with lupus, unless I actually were to have a lesion break out. or god knows what else.....I just hate lupus, but I am going to keep fighting it....purrs..catspaw1955
Mountain Mama said:
Our society is focused on the young and healthy. 100 years ago people would see family members and neighbors become extremely ill at home, and they would die at home. Today sick people and those near death are to be avoided. No one wants to be reminded that they also have an "expiration date". As others on this site have pointed out, many people with Lupus don't look nearly as bad as they feel, so if we don't look sick, we can't BE sick. It's so tiresome.
For me, it was almost the reverse. I āwas always sickā before my diagnosis friends would say. And I slapped on a happy face and kept going. Now that I have lupus, itās not ok for me to talk about being sick or what is going on. Itās beyond crazy to me! But those āfriendsā are no more really. Sister included. Sigh. Itās so hard to navigate through who will be helpful and hurtful. Ultimately, you need to care for yourself first. Donāt be ashamed or apologize for that.
I agree with you Kelly, my mother who I adore, refuses to accept I have lupus, or if I do have it I must have an extremely mild case, (I am just getting over a flareup, that I had about 8 lesions on my face and neck) mamma just does not want to admit I have a serious illness,,,,,she adores me too, and wants to not think about how awful it is......and my mamma has rhuemetiod arthritis, I got the lupus from my father......I am really happy I found this site, I have never spoken so freely about the lupus, and I am just thrilled tthat I feel like a weight has been lifted off......god bless all you wonderful people on this site......purrs..catspaw1955
Hi everyone. I have never heard of osteoporosis in your wrist. Have any of you?? I guess it only stands to reason, they are bones aren't they!!! After 2 sleep studies I will be getting a C-PAP machine. Oh goody!! Oh Yah I WAS glaucoma suspect and now I definitely have it. Those were my 3 new issues last week. I can't to see what next week bringsLOL. I don't care though because I leave for Vega on Tuesday. My hubby won't fly so my daughter is going w ith me (she is 46).
Take care of yourself everyoone.
Cindy
I am 40 and live with my mother. She loves me and cares for me when I am sick but sometimes she forgets that I have a chronic illness. I often end up having to remind her why I am sleeping in or why I can't open a jar...the same jar that I opened the day before. I don't think my mom means harm I just think that this disease is so unpredictable that she has to be reminded. That being said, I don't give a crap about those who live outside my home! Family, friends or foes I go through life knowing that don't understand, possibly won't understand and maybe never will understand.
This whole ordeal has definitely changed my character....I think for the better.
Keep your head up. Surround yourself with only positive people.
People always tell me to brush it off, but that is easier said than done sometimes. Sometimes it is easy but when it is really hurtful I can't do it. I am still trying to cope and it is getting a little easier, but when people say really hurtful things I can not do it.
I am new to this discussion group and I can't tell you how much this thread has just helped me. This last year has been increasingly difficult for me. I agree that because this disease is "invisible" it is so hard for family and friends to be understanding and supportive when they can't "see" what we are telling them. Sometimes I feel like I am annoying them with the same story and they feel obligated to ask how I'm feeling and I'm letting them down when I'm not "peepy" for them. It's hard not being the "normal" person I used to be. I thank you for your comments.
hi autumn, wow my mom is similar except she wants to believe I do not have lupus sle,,,,,but I have been getting lesions on my face, and am getting weaker,,,,,well now she worries about me dying young she is 80 and I am 59......I think my lupus is a mild case, I am so glad I found this site, it really helps to talk to other people who have this rotten disease, and I am like you too where I do not give a hang about what others think, except for what my mamma thinks, I live with my mother and we get along great she has rhuemetoid arthritis herself, but she has never crippled up with it, I am so lucky to have my mamma still with me and going strong....but mamma at 80 has more energy that I have some of the time, I wish they would make a pill that could get rid of this disease, just take it one day at a time sweetie,,,,,,,,,and god bless you an yours......purrs..catspaw1955
Autumn said:
I am 40 and live with my mother. She loves me and cares for me when I am sick but sometimes she forgets that I have a chronic illness. I often end up having to remind her why I am sleeping in or why I can't open a jar...the same jar that I opened the day before. I don't think my mom means harm I just think that this disease is so unpredictable that she has to be reminded. That being said, I don't give a crap about those who live outside my home! Family, friends or foes I go through life knowing that don't understand, possibly won't understand and maybe never will understand.
This whole ordeal has definitely changed my character....I think for the better.
Keep your head up. Surround yourself with only positive people.