Monday, 7 October 2013

I Wish I'd Been Told

I didn't know what to expect when I was first diagnosed with lupus.  I was just given the name of
the disease and that was it. I probably would have been told more if I'd asked, but I didn't know enough to know what I needed to know.

Some of the things I would have liked to have been told are:

  • "You didn't do anything to cause this."
  • "You will get tired. It's normal with lupus. Don't try to keep pushing yourself, it only makes things worse."
  • "You can take medication to reduce the pain, but don't expect to be totally pain-free."
  • "This will affect all of your life. Try to just accept it, becoming upset about it won't help."
  • "It will affect your family, your friendships, every one who is involved with you in any way."
  • "Lots of people who know nothing about lupus will give you advice on how to handle your condition. Just try to laugh it off."
  • "Your kids will cope."
  • "This is how you find a lupus support group....."
That's a few.  

I asked some other lupies on social media what they wished they'd been told when they were diagnosed. Here are some of their answers:

  • Danielle, USA. "I wish I'd been told anything. Everything I know I researched on my own."
  • Bobbie, Australia. "My doctors have been amazing, and I wouldn't change them. My big surprise has been that people (men) would see me as damaged, broken and too complicated."
  • Mary, USA. "I would like to have known how much my life was really going to change. That way I could have started planning for the future at diagnosis."
  • Carolyn, USA. "I wish I'd been told when diagnosed. Nobody bothered to tell me for about eight years, and I missed all that medical care. Male doctors don't waste time with older women! I'm still hurt and angry. Thank God for Dr Amanda Luchsinger. She got me to the right people, as did Dr Dumont. Thank you! It really hurt my health not knowing all that time."
  • Patty, USA. "That my kids would be OK, even great, growing up with a mom with lupus! It helped shape them into the wonderful young adults they have become."
  • Tanya, Australia. "I wish I was told how much Lupus sucks ass! On a serious note, I wish I was told just how much of a life changing roller coaster it would be with all the different symptoms/medicine side effects and all that it does to your body, mind, family and self."
  • Lisa, USA. "I wish I was told how hard it would be to find the right doctors to work with to help my conditions as they come and go.
  • Frankie, USA. "The emotional and psychological impact it would have on my life."
  • Jenn, USA. "Get a great psychiatrist and support group. More emphasis on the mental toll is needed."
  • Cindy, USA. "How lonely life would be. If it wasn't for the Lord, I would go nuts."
  • Twyla, USA. "I also wish  I was told how lonely this disease can be. If I'm told one more time I'm loved and will never have to face a flare alone again ... just for them to run the minute I have a flare ... my heart breaks each time ... I'm so happy for those of you whose partners are there and supportive!! That's my dream to have someone who doesn't run scared."
  • Tosha, USA. "I wish I had been told anything as well. I was told I had SLE and that was about it. The rest I have learned along the way."
  • Rosie, USA. "I wish someone had told me that my whole life would change with this diagnosis."
  • Christie, USA. "I was under the impression that if I took my meds and rested more I would be fine. I wish I had been told upfront to prioritize everything I want to do and how to plan ahead for busy days so that I'm rested up and can crash as soon as it's over."
  • Nidia, USA. "How difficult it would be to have the same life as before."
  • Kathy, USA. " I wish I had been told more than the one page handout that I was given that said Don't Panic it's Lupus at which time the doctor said just google the Mayo Medical Site and read, don't look at the pictures!"
  • Nikki, USA. "I wish I was told how much brain fog & being tired ALL the time would be such a frequent thing that's out of my hands!! Glad, my kids & hubby usually know what I am trying to say when I jumble everything up, they just chuckle and say bad day??? Makes me smile when I really want to cry!"
  • Sheri, USA. "I wish I had been told that I wouldn't be dead in 10 years. I've outlived that estimate by 14 years already."
  • Tasha, USA. "I wish people would have told me how hard it is to find good and understanding doctors."
  • Kandy, USA. "How little everyone knows about it or how little they care to learn about it."
  • Jen, USA. "Your life will go downhill and will be debilitating. The pain will be so bad that you won't be able to get out of bed. Oh you'll also lose all your friends."
  • Holli, USA. "Get ready for everything to change!"
  • Beth, USA. "The symptoms I was experiencing were normal for a person with Lupus. I needed to know what Lupus fog and fatigue was."
  • Amy, USA. "I wish that I would have known the personal loss of freedom. I am homebound so much of the time and it is hard. Especially when I was a very active person prior to my disease."
  • Julie, Australia. "I have got to tell you the one thing I wasn't expecting was CNS damage and neurosurgery. My optimism occasionally takes a battering but thankfully the ability to laugh at myself helps pull me through  I have learnt to be more grateful for good days, and take nothing for granted. I don't think anyone or anything anyone can tell you can truly prepare you."
  • Katie, England. "Wish I had been told to make friends with people with Lupus! That's been the biggest help to me."
  • Corie, USA. "I wish that I was told how my whole life would be turned upside down and inside out."
  • Twyla, Canada. "How difficult it is living with an invisible chronic illness."
  • Joke, The Netherlands. "Wish he would have told me how much my life would change. He did tell me it is a terrible disease and he can only do so much for me and that's frustrating to him too."
  • Pam, USA. "I was not told I read it on my Chart."
  • Peg, USA. "Wish they had told me not to be out in the sun!"
  • Veta, Canada. "I wish I had been told the seriousness of Lupus and not just given the basic 'You have an autoimmune disease.' How it leads to and is connected to so many other diseases. also how Lupus would affect the rest of my life. Lastly,what changes I need to make to have the best quality of life possible."
  • Katie, USA. "The emotional burden it puts on those closest to you, also the emotional toll it take on you mentally as well as physically."
  • Nada, USA. " I wish that they would have told me how much it would change my life. How at times you could feel ostracized, lonely, how no matter how well you took care of yourself, you would still hurt, still feel like a train wreck. How this affects the whole family and that it can tear families apart. How you can't depend on anything from hour to hour because your body changes literally with the weather. Sometimes you feel like no one understands. You try to explain but others just don't get it. One by one friends will drift away because just like cancer or a terminal illness, they just don't know what to say. They get tired of you having to reschedule a lunch date or a movie because you wake up that day feeling so sick you just need to pull the covers back over your head. I am so thankful for my doctors, and truly thankful for my two sisters, Ann & Millie, my niece Jennifer, and my son and his family. They are my rocks. they keep my spirits up, they motivate me and they are there with me every step of the way."
  • Cindi, Canada. "I was so grateful that I didn't have AIDS it didn't matter at the time!"
  • Mary, USA. "That symptoms will flare it's ok to feel bad and stay in bed and when you do expect criticism and sideway glances from those who think you're faking it."
  • Debra, USA. "I also had to research everything. It would have been nice to know anything more than where to pick up the meds!"
  • Julie, USA. "How each day is so different. It is the inconsistent symptoms each day and having a difficult time making future plans. Future being the next day, week or end of the month. Also how to deal with the extreme brain fog, fatigue, and full body pain."
  • Diane, England. "That all my symptoms were typical and what to expect."
  • Wendy, USA. "I'm sending you to a rheumatologist and she will test you with major expenses and tell you its inflammation from arthritis which you already know plus lupus."
  • Sallie, Australia. "Wish I'd been given the right diagnosis seven years earlier. Other than that I was told only that I had SLE and that I'd need plaquenil for the rest of my life and given another list of meds I'd need.  I wish I'd been told how much it would affect every other aspect of my life: physical , mental, financial, social and emotional. I've learnt along the way."
  • Eva Marie, Philippines. "It took my doctors six months to discover. cbc unstable. Fever very low grade and  I fall on the 11 categories for lupus symptoms."


  1. I wish my Dr knew more about alternatives. She was open to me looking though and I am grateful for that. I have been Symptom free for nearly a year with what I have found. I am am happy to share with anyone who would like to look at alternatives to western medicine. You can email me at put Lupus Alts in the subject please.

  2. Great blog! I now know all that now ... but after 4 years after diagnosis. The diagnosis I've waited four years ...... Wooosh!


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