June 20, 2021


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What I Wish I Had Known About Life With Lupus

4 min read

Living with any chronic illness is challenging. Lupus is no different. In life there are always things that you don’t know. Things 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 live through it!

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 shared with me. I also posted in my support group asking what they wished someone had told them.

The list 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:

Related:​ The Endless Cycle I Experience in Life With Chronic Illness

  • 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.
  • You may develop depression as you start to really accept that the change in your life is real.
  • It is OK for you to feel the way you feel!
  • Seeing a counselor might help.
  • Canceling plans will likely become a new norm. It is just part of being chronically ill.
  • Many people in your life won’t understand why plans are so often cancelled.
  • How you feel can change at the drop of a hat. Even if you wake up feeling great, it doesn’t guarantee you will feel that way all day.
  • Not all rheumatologist’s (or other doctors ) 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.
  • It is OK to take time for you! No matter what others say, it’s OK to take time to focus on you.
  • You may have to educate doctors, nurses and other providers on lupus.
  • 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!)
  • I need to learn to give myself some grace.
  • If I go to the doctor or the ER with a pain-related issue, it is highly likely I will be treated like a drug seeker! No matter if I am or not.
  • Many friends and some family will turn their backs on me and simply walk away. They won’t understand the changes or just simply can’t handle it.
  • Pain will become something I will deal with on a daily basis! Not only from lupus and 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 debilitating.
  • Living with lupus or any chronic illness is 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 other duties may become difficult.
  • You will likely become inundated with dumb questions based on my condition(s). People may 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, there are tons of groups available with people who understand my feelings. And I am never alone.

Related:​ How Hope Gives and Takes in Life With Chronic Illness

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 basic 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 you have to deal with. Please feel free to share this with friends, family or others who struggle with chronic illness.

I would love to know what you wish someone had told you. So please leave that in the comments.

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!

Related:​ Balancing Frustration and Hope When Living With Chronic Illness

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

Read more stories like this on The Mighty:

How Acknowledging the Good and Bad Helps Me Cope With Lupus

How I’m Choosing to Navigate the Challenges of Dating With a Chronic Illness

How to Create Your Own Support Network When You’re Chronically Sick

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