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Life With Lupus

How to explain to family lupus


#1

Although they feel that Ive been dealing with SLE lupus for years, I have only been diagnosed in the last 9 months. My lupus, POTS, sjogrens is with many symptoms presently. Affecting my CNS, heart, lungs, skin and kidneys. I am so tired of my mother telling me on a daily basis rather I seem to look better (i feel like crap inside) or telling me I look swollen etc. My husband has a Witch of a sister that is so jealous of me and I have no idea why! Im a RN and unable to work due to the congestive heart failure that the lupus cardiac issues has caused among other issues! I try my best to hide every symptom from her or the rest of his family! I dont complain! Lately, due to both my father and my husbands father being very ill. Ive been forced to be around them often!
I had a very RED swollen butterfly rash, fever, red hot knees and knuckles. It was impossible to hide the limp when walking. We had 9 hours in a waiting room while my father in law had heart surgery! Im sure all of you know what I’m saying, “I totally didn’t need to be there!” My husband insisted I be with him. He too, is having difficulty understanding, why is once spunky hypered social bug would rather be home and sleeps non-stop! My sister in law sat there almost trying to get me to bring up my illness! Talking about joint pain being no big issue for most, how her daughter had rosela on her face and its no big deal, how people make up illnesses etc. I did not add to any of her brought up topics! It was a very long 9 hours! We all got up to leave and the waiting room was on the second floor! They all went to the steps and I quietly motioned to my husband that I needed the elevator! I have pericarditis presently and severe tachycardia so the steps is def. avoided by me presently! The sister in law looked at the others and said, "oh my gosh, she’s taking the elevator! As we all were going into the elevator, she shoved the visiting hours at me and asked when I was going to sign up to sit with her father because she worked! It was the first time I brought up my illness and said, “I cannot commit to taking part! I will not be helping-I cannot! explaining that the chemo had my White Blood count down and I wasn’t suppose to be out in public adding I Just Dont know day to day!” She looked at the family and said, “oh here she goes?” I have never sat down and explained my illness to her nor have I ever told her about it! The other two sister in laws, I am very close too and they have seen me in times that I could not walk so I’m sure they are mentioned my illness to her! I do not complain! My father is in a two year remission fromcancer and is having repeated heart attacks from the chemo! He basically has no heart left and if I feel like doing anything-I want to spend time with him! She looked at me and said, there is no way my father had six heart attacks in three years?? What the heck do you say to someone like this…Usually, I’m a confident person! Lately, I crumble! My husband did go to talk to her and voice to her basically to SHUT up! She doesn’t stop! I’ve dealt with my husband starting out calling me lazy before I had any clue what was going on with my body! It took over a year to get properly diagnosed and finally start treatment! I had points that I actually could not walk! I lost my memory. etc. Now my dumb sister in law is telling the family that she thinks I have munchousers?? I usually stay completely away from her and never attend family functions that I have to deal with her! Its hard enough to deal with my own new diagnosis and scary medications! I cannot get out much or spend time with my good friends. My cardiologist and rheumatologist will not release me ever back to work so Im applying for disability which is breaking my heart! I love my job! How do you say, “NO!” without being called lazy or treated like you want attention or something! How do you explain to people that one day, "you can walk and the next you cannot??! I once had a very happy life that I loved now I hate waking up in the morning!!! I’m depressed!
I don’t know rather to explain to others or just keep to myself?


#2

Hey thenewme, I think you’ve described one of the biggest challenges of being a patient. This is especially difficult when you look “fine” on the outside! It sounds like you have the support of your husband and your doctor team- and I hope you can spend more time with your good friends too. As to how to deal with your sister-in-law, I wish I could offer meaningful advice. Maybe just know that you are not alone, we understand what you are going through here, and don’t hesitate to vent!

Can anyone else offer advice on how they explain lupus to their family and friends?

Meli from Mod Support


#3

Im so sorry you are going through this. I’m been diagnosed for about 2 years. My extended family never asks how I am. My husband is very supportive, but I can see him slowly getting tired with what has become “my new normal”. Just remember, what other people think of you is not your truth. Stay strong. Sending hugs your way.


#4

Thank you for ur reply, it is frustrating! I could never say the things to someone that this woman says about others! My son tells me that she is insecure in herself and not worth my time! It hard enough to deal with new limitations but dealing with people like her is just too much lol!


#5

Thank you for your kind words, I finally broke down tonight and told him
that I’m not as strong as I act! He listened which was an improvement! My
anti DNA climbed and my rheumy wrote on my charts that my sle lupus was
presently very active! My urine dip is showing protein and high WBC! My ekg
showed changes from the pericarditis! I e been exhausted and very
uncomfortable! I do everything not to show how I feel! I’m tired of
pretending in my own home! If someone else in the family is ill, I’m was
always the first one at their side and helping them to get better care! I
don’t want to be a burden to anyone but at times I have no control of my
muscles they let me go to the floor! Sometimes I think that it’s worth
waiting on my family to understand and help me but then other times I feel
that it would be better to be alone and able to relax and take care of me!
I told my husband tonight that the days I smile it’s not that I feel well
but only a day that I can be stronger! I hate this disease and the fact
that we must deal with it! Two years ago, I fought for a diagnosis to get
treated and back to normal! I guess that I’m realizing this just be life-
I’m so scared!