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Everyone here knows what it means to live with a rheumatic condition. If you just learned your friend has lupus – newly diagnosed OR living with it for years – what would you say? Would you offer any tips? How would you support them?
Share below so we can let our larger community know what someone living with lupus needs from friends.
Moderator & Contributor
MAKE SURE YOU HAVE THAT SUPPORT IN PLACE FRIENDS WHO LISTEN, DOCTOR WHO LISTENS, CARES, FAMILY IF NOT SOCIAL WORKER, CHURCH BUT MAKE SURE YOU LOVE YOUR SELF ALSO TAKE IT SLOW LOOK AT MEDS AND ASK LOTS OF QUESTIONS EAT WELL, REST, DECORATE WITH BRIGHT FLOWERS, GET A PET TO HELP WITH ANXIETY, WALKING, IT DOES NOT HAVE TO DEFINE YOU. THERE IS SUPPORT GROUPS FOR HELP. BY REACHING OUT YOU MAKE YOUR SELF STRONGER TO FIGHT THIS DISEASE AND GET BETTER ONE DAY AT A TIME. REMEMBER IF YOUR DEPRESSED GET HELP ASAP.
It took 14 years to be diagnosed with lupus and unfortunately their are dr.s who choose to be oblivious to the disease. When you are first diagnosed you will most likely be angry because most of the time you were told that it was fibromyalgia, stress or they can't find anything wrong. You need to get a cardiologist, lung, kidney, endocrinologist and psychiatrist also a rheumatologist and a gastrointestinal dr.'s. You need to have a heating pad and thermometer is to see if you have a low grade fever that is one of the symptoms of lupus. Then watch what happens when you eat. I noticed a lot of my pain came from my intestines and once I started to change my diet some not all of my pain subsided. I'm alone and had to learn everything by myself. I have so many allergies that I can't take any meds for my condition. I just listen to my body and I am lucky if I have enough energy to shower. But I tell myself that it could always be worse. Ask questions and if your dr. Doesn't listen or is tired if seeing you because your condition is overwhelming for them. Then time to look for another dr. Keep your stress at bay and anyone or anything that triggers your anxiety and stress you must avoid. I have learned to take it a second at a time. It's a hard disease because it can't be seen and people will judge and make negative comments. Remember this is YOUR BODY that you have had since you were born. No one else knows it better than you. So if something is wrong don't stop getting the answer to whatever is happening to you. I didn't thats how my tumor on my spinal cord was found. I was told nothing was wrong with me for 15 years. I didn't stop because I knew something was wrong. Sure enough a schwannoma tumor at c6-c7. So ask, research and be persistent.
Thanks for sharing this great advice. NO ONE should have to wait 15 years for a diagnosis. I'm glad you continued to advocate for yourself and finally got some long overdue answers! Thank you for sharing your insights and supporting this community!
-Gabby (team member)
I was very crippled up since march .then was told i have lupus by taking blood
See speciist end of sept
So worried about every thing
Especially my hair falling out so depressed.
Gabby (team member)
So sorry that you have had such difficulty with getting your diagnoses and treatment plan. It must've been so stressful to deal with folks who had no clue what was wrong. I imagine some were not very supportive and made you doubt that you had serious issues. You dont have to go through Lupus alone. I find so many informational articles on Lupus.net and, get to hear others journeys, like yourself, who need ears to hear and hearts that care to support them.