The Things I Wish Someone Would Have Told Me

Even though I’ve been diagnosed with Lupus, Fibromyalgia, and Endometriosis there are still things I come across that I wish someone would have told me about. You all know what I’m talking about, those little “tricks of the trade” that people who have been dealing with that condition for awhile and no one shares with the newbie. So after having a discussion with several people across several different groups, I have complied a list of things by asking others who have autoimmune illnesses. 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 been honest with me and told me that it may take MONTHS or YEARS to accept the changes brought forth by the illness. If you can ever truly accept the changes.

-I wish someone would have made it more clear that this 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.

-I wish someone would have mentioned the depression that happens as you start to really accept the changes in your life is real. As well as made it clear that is is okay for you to feel that way! And suggested early on that seeing a counselor might be a good idea. 

-I wish someone would have prepared me for the fact that there is a very good chance that you won’t make a LOT of the plans you schedule, due to your health. Even if it was something you planned and were looking forward to. You just may not make it!! And in most cases your friends will never understand why you can’t just get up and go.

-I wish someone would have prepared me for the fact that not all Rheumatologist’s (or other drs for that matter) know much about Lupus or the way to treat it. And most even if they are familiar may not know the newest meds or what’s really best for each individual patient.

-I wish someone would have reminded me that no one will 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 wish someone would have told me that anytime I go to the dr or the ER with a pain related issue that I am most likely going to be treated like a DRUG SEEKER!  Whether I am or not. The drs don’t care. They just go off what they see before even talking to the patient!!!

-It would have been great to know that many of my friends and some of my family would turn their back on me and simply walk away! Because they don’t understand the changes in my life or just simply can’t handle it.

-I wish someone would have prepared me for the pain I would feel, not only from Lupus & Fibromyalgia, but also from Interstitial Cystitis and Endometriosis!

-I wish I had been prepared for the fatigue that Lupus brings on. It’s not like any fatigue I have felt before. It can honestly be totally disabling.

-I wish someone would have prepared me for the cost (even after insurance) that I will have to deal with and pay out of pocket.

  -I wish people understood that exercising and eating better will NOT cure my conditions.

  -I wish someone would have prepared me for how hard it is to keep a full time job doing the things you like once you are diagnosed with a life changing disease!

-I wish someone would have prepared me for all the dumb questions I get based on my conditions. I know people mean well, but their delivery could definitely be worked on.

– I wish someone would have prepared me for all the conditions that would come along after lupus. I had no idea that once Lupus came into my life that he would then invite all of his unwanted friend.

This is just a list of things that was combined from a poll Results from a questionnaire in an autoimmune support group, along with my own thoughts. I know many of you feel this way and could contribute many more points to the list. 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. And always 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

2 comments

  1. writerkatgn says:

    These are great! I just wish I would have had someone to walk with early on, to help me accept my illnesses and help me understand that all of this is normal.

    • Amber says:

      Yes!!! Exactly! I started a support group about 4.5 years ago with some fellow lupies and they have been my saving grace for sure. No judgment, no cattiness and just love for everyone. Without them I don’t know what I would have done!

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