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Living with any chronic illness is challenging. Lupus is no different. In life there are always things that you don’t know. Things that you only learn as you go, but wish someone would have told you. This is no different for those who are chronically ill. I have learned many things through my journey that I wish someone would have told me. But sadly most things you just have to learn as you go!!

Over the last eight years I have made a list of things I wish someone would have told me about living with chronic illness. The list includes things I’ve come across, as well as what others have told me. I also posted in my support group asking what they wished someone had told them. 

The list we complied could apply to anyone, not just me, but could change the way you do or look at things!!

I wish someone would have told me that…..

  • Lupus is not something you can adjust to overnight! It may take a lifetime to fully adjust to the changes in your body, your energy level and your fatigue.
  • Depression often happens as you start to really accept the changes in your life is real. 
  • It is okay for you to feel the way you feel! 
  • Seeing a counselor might be a good idea. 
  • Cancelling plans will likely become a new norm. It is just part of being chronically ill. 
  • How I feel can change at the drop of a hat.  Even if I wake up feeling great that doesn’t guarantee I will feel that way all day. 
  • Many people in your life won’t understand why plans are so often cancelled. 
  • Not all Rheumatologist’s (or other drs for that matter) know a lot about Lupus. Or the best ways to treat it. If they do know about lupus they may not know the newest meds or what’s really best for each individual patient.
  • Most people won’t understand what is happening to me, and no one will stand up for me like I will. I MUST ADVOCATE FOR MYSELF AT ALL TIMES!!! (As do each of you reading this!)
  • It is okay to take time for me! No matter what others say, it’s okay to take time to focus on me. 
  • I need to learn to give myself some grace.
  • If I go to the dr or the ER with a pain related issue that it is highly likely that I will be treated like a DRUG SEEKER! No matter if I am or not. 
  • I may have to educate doctors, nurses and other providers in Lupus. 
  • Many of my friends and some of my family will turn their back on me and simply walk away! They won’t  understand the changes in my life or just simply can’t handle it.
  • Pain will become something I will deal with on a daily basis! Not only from Lupus & Fibromyalgia, but also from Interstitial Cystitis and Endometriosis!
  • The fatigue that lupus brings is REAL. It’s not like any fatigue I have felt before. It can honestly be totally disabling.
  • Living with lupus or any chronic illness is very costly, even with insurance. 
  • Every Jane and Karen will tell me I need to try everything from exercise to oils to a diet change to “cure” my lupus. Even though those things will NOT cure me. 
  • Keeping a full time job and keeping up with my other duties may become very very difficult. 
  • I will likely become inundated with dumb questions based on my condition(s). I know people mean well, but their delivery could definitely be worked on.
  • After I get diagnosed with lupus many other diagnoses will likely follow. I had no idea that once Lupus came into my life that he would then invite all of his unwanted friends. 
  • No matter how lonely and misunderstood I feel that there are tons of support groups available with people who understand my feelings. And that I am NEVER alone. 

I know many of you can relate to all of this. I have learned so many things since being diagnosed.  Honestly, I thought I had a good grip on what would come after the diagnosis. And what my life would look like. I felt that my years of working as a nurse and my education had prepared me.  But I was very wrong. What I knew was very base level and did NOT prepare me for what was to come. 

I hope you enjoyed reading this and it made you think about all the things that you have to deal with. Please feel free to share this with friends, family or others who suffer with chronic illness. 

I would love to know what you wish someone had told you. So please leave them in the comments.  I try to update this post every every so often with things that come up. As well as what others share with me!!  

I want each of you to remember YOU ARE NEVER ALONE IN YOUR JOURNEY!! There are always many of us out there willing to help and talk you through any struggle!!

With Love,

Amber

**This list was formed from poll results from a questionnaire posted in an autoimmune support group, along with my own thoughts and experiences. 

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