Do others presume your condition to be your fault?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 1/30/2013 12:22 PM (GMT -6)   
I'm pretty lucky to have many friends and family members that are supportive...however there are always a couple who question my condition. When they start with their ignorant comments, I try to consider the source. I rarely see these people but when I do, I'm always biting my tongue. One is a phychologist and seems to think she is an expert on me.
She is an inlaw, and I only see her maybe once a year...so I guess i'm lucky. smilewinkgrin   Her cure for me...get to be more physically flexible, my system is not balanced.
 
Feel bad for those who have to put up with this type of thinking on a regular basis.
 
Hugs, Robin
Fibromyalgia, Adenocarcinoma survivor, Lung Lobectomy, Heart Disease, Pulmonary Hypertension,
MCTD (Lupus, Scleroderma and RA)
Raynaud's, Degenerative Disc Disease, Osteoarthritis,
Osteoporosis, Hypertension and Migraines
"Where there is a will, there is a way"

MetoYou
Regular Member


Date Joined Oct 2012
Total Posts : 97
   Posted 1/30/2013 12:41 PM (GMT -6)   
Funny that theres a few friends like almost best friends that i havent told about my Lupus diagnosis and they havent noticed any differnece i had hair loss but i changed and put it up so it looked the same just up but i have a nan that can be ignorant at times comparing my lupus to my grandpas RA now i have that as well but the pain is not as bad considering those of lupus patients loads of people can have RA but lupus not so much she will say excersise and im like "WHAT" with pain so intense sometimes how can you even lift your hand some just dont understand until there in your shoes.

I have SLE, Anemaia, Antiphospholipid syndrome, RA and Low Vitamin D and my nan is healthy with no problems how can she possibly get what im going through. i no shes old and i have respect so i just keep my mouth closed.

Danielle

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 1/31/2013 9:21 PM (GMT -6)   
I don't have people thinking that Lupus is my fault, but I do have some fols (friends included) that think I am not "really sick" because I "look good."  Sometime I wish those people could feel what my body feels like inside.
 
Laura

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 1/31/2013 11:04 PM (GMT -6)   
Thank you ladies for your replies.

I guess no one understands unless they have lived with a chronic pain condition. Having MCTD, I seem to have a little bit of this and that...lesions at times on face and scalp but not the typical lupus rash...skin thickening and tightening on face, some atrophy on my right forearm, nose and temple area. I had a biopsy that confirmed scleroderma...joints that swell...RA. Started out taking prednisone and plaquenil...now I just take MTX for the autoimmune stuff.

I also have fibro along with some heart and lung problems.

My sister-in-law doesn't have a clue...she just believes, I need to take better care of myself. My hubby, her brother is as healthy as can be...we eat healthy and exercise.

Hugs, Robin
Fibromyalgia, Adenocarcinoma survivor, Lung Lobectomy, Heart Disease, Pulmonary Hypertension,
MCTD (Lupus, Scleroderma and RA)
Raynaud's, Degenerative Disc Disease, Osteoarthritis,
Osteoporosis, Hypertension and Migraines
"Where there is a will, there is a way"

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 2/9/2013 1:06 AM (GMT -6)   
Robin,
I understand where you're coming from. I'm only 25 and people look at me and don't see how much pain I'm in. I laugh a lot of things off when inside I'm in tears just trying to walk. I work 12 hour shifts as an ICU nurse and have learned to hide my pain very well. Its always my favorite though when you get people that don't understand why you take so much medicine or why you need to take pain meds. My dad is not medically inclined whatsoever and I recently had (on top of all my joint pain and lupus related pain) severe abdominal pain. I was given morphine ER twice a day and he had a fit when he found out I was taking that. He actually asked me if I was really in that much pain that I needed that and told me I was going to get addicted. Pain is a terrible thing to deal with and people just don't understand unless they deal with it everyday. Luckily my husband is very supportive and understands but even then he has his days where I feel like he doesn't believe me sometimes. The thing is when people ask how I'm feeling, I get tired of saying not well all the time. I've just learned to deal I guess. I believe you. Its terrible and its definitely not fair. Hang in there :)
Endometriosis 2011, Lupus & Raynaud's March 2012

Meds- Lo Loestrin Fe, Plaquenil, Prednisone, CellCept, Prilosec, Celebrex, Tramadol

bluejeans
Regular Member


Date Joined Dec 2012
Total Posts : 269
   Posted 2/9/2013 8:23 PM (GMT -6)   
Whenever someons asks me I always reply, fine. Most folks ask you how you are, as a greeting, they don't really care and would not understand. Only my hubby and children know what is really going on with me and what my meds are.\
Most folks are ignorant to our issues.
Post lymphoma,Spleenectomy, Lupus, Sjorgrens, RA , Fibromyalgia, GERD, short bowel syndrome, scolisis, arthritis of spine, spondylosis, splondylesis, DDD,DJD

Faith in God, the love of my family and a good attitude keeps me going.

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 2/9/2013 11:46 PM (GMT -6)   
Hi Everyone. Years ago someone on the forum suggested we read the spoon theory and share it with anyone willing to listen. It is on this website: www.butyoudontlooksick.com It has come in handy sometimes to help folks understand. Also, this may sound odd, but I talk about my lupus to strangers every chance I get. At the grocery the cashier saw that I was buying pre-cooked east Indian food and he said it sounded good and easy. I replied, "I have lupus, so easy works well for me." He then sincerely wanted to know what lupus was, so I told him. I walking up some stairs holding up traffic and say, "I'm sorry, but I have lupus and can't walk any faster." I want to spread the word about lupus and I mention my lupus as often as I can squeeze it into a conversation. I feel people need to know.
 
Chronic illness is a disease that never ends. For me lupus has occasional days which are okay and lots of bad days. For me, severe fatigue, pain, and medications are part of every day. My weight watchers leader knows I was in a coma 2 months and was hospitalized three times last year with pneumonia, sepsis, and a partial bowel obstruction. Regardless, one day she said, "But you don't look sick." I laughed and said there is a lupus website with those exact words. www.butyoudontlooksick.com Everyone should read it. Love, Butterflake

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/10/2013 3:27 PM (GMT -6)   
Yes, I feel like Lupus needs to be understood and broadcasted.

I was at a store the other day and the girl noticed the gloves and hat I was wearing. She smiled and asked me if I had just finished gardening. I said, "no, I have Lupus and I have to protect myself."
She asked, "What's that?"
"It's an autoimmune disease. It's where your body starts attacking itself. You have too many antibodies in your body and things go wacky with your body."
Looking frightened, "is it contagious?"
"No, honey." And I walked away hoping she gets curious enough to do her own personal research.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, July 23, 2018 5:05 AM (GMT -6)
There are a total of 2,984,466 posts in 327,226 threads.
View Active Threads


Who's Online
This forum has 162006 registered members. Please welcome our newest member, Heart10.
229 Guest(s), 2 Registered Member(s) are currently online.  Details
whythisnow, Scarecrow