The first time I ever heard of Lupus was when I was in high school. A friend was diagnosed and all I knew about it was it made her tired. If I am being completely honest I didn’t give it much thought. Whenever I saw her she seemed “normal” enough. There wasn’t anything I could see that concerned me, so like many of us I assumed it wasn’t a big deal. She was such an ambitious girl, there was so much life in her, and I thought if something was truly wrong she’d talk about it. We weren’t the best of friends but I always felt close to her. I was naive and ignorant. I didn’t even know what Lupus was or how complex the disease could be.
There are so many misconceptions with people who have Lupus. They don’t look sick, they sleep too much, maybe they should take more vitamins, what if they try this or that. What most miss is there is a whole world going on behind closed doors. The way we are dealing and trying anything to heal. I didn’t recognize that with my friend. I so wish that I did. Not that I could of done anything or she’d want me to be there, but at least she’d know I was trying, that she wasn’t alone.
People with Lupus are often misconceived as private or unsocial. What many don’t understand is it’s an isolating disease. Lupus usually does not come alone. There’s a whole list of other side effects and accompanying symptoms. Some of mine include anxiety, fibromyalgia, and IBS. The list is much much longer [but that’s not what this post is about]. It’s much easier to hide and be with yourself, instead of having to explain what is going on or why you can’t do certain things. The thought for me is “if they don’t see me they won’t know, and I can still seem normal.”
That’s another thing the word normal. That’s probably the biggest misconception, you look healthy so you must be. It is so annoying to feel like you have to constantly explain why you are hurting. That there are real consequences for certain actions. I get so overwhelmed with others assumptions it interferes with me concentrating on myself. Am I suppose to make myself look or act sicker so they can “see” Lupus?? [not gonna happen].
Going off this thought, medications don’t take it all away but they help. There’s a lot more that goes into managing Lupus. My daily decisions can effect me for weeks to come. From how long I walk to what I eat, all of it has become a conscious decision. All the way down to when I shower. There’s no room for error and even if I somehow have a “perfect” day that doesn’t guarantee I will feel well. There is no cure for Lupus. All I can do is manage it and stay positive.
POSITIVE. Do you know how many times I have been told my mind will help heal me if I am positive? Let me just say I am no where close to a pessimist so if it all it took was to be positive, I’m positive I would be healed (like what I did there). I almost drove myself nuts thinking this was all in my mind. There came a time I had to face reality. Something was very wrong and I needed medical help. People with Lupus aren’t negative, they are lost. The havoc your body feels even when you baby it is all consuming. Even when you have a positive mindset there is more that has to be done. It’s not a cold that is going to go away, it’s a forever life issue.
I can only imagine the difficulty my friend had being diagnosed in high school. I did not start experiencing symptoms until after the birth of my third child. From what I understand the disease was dormant and major life event woke it up [child birth]. Everyone experiences Lupus differently. If there is anything all my countless Doctors have agreed on is no two cases are the same. So when people look at me crazy because their brothers-wife’s-mom-sister’s-friend has Lupus and is completely fine because this and that worked for them, and I say it didn’t work for me, doesn’t mean anything except what helped them didn’t help me.
These examples are the very tip of misconceptions people with Lupus go through. Being diagnose in my thirties I feel like I had it a little easier than my friend. I can look back and appreciate her strength. I still don’t know how intense it was for her but that word [Lupus] holds so much significance for me now. The next time I heard someone even say it is when my primary care physician became concerned about the possibility. I had no clue how much the word I paid no attention too way back when would change my world.
My realization is, I can’t expect people to not have misconceptions to a disease I knew hardly anything about. I didn’t even learn what it really was until going through the process of being diagnosed. Most people mean well. I’ve learned to embrace their advice as concern and dismiss their ignorance as just that, not knowing better. Misconceptions will always be there but it could be worse. I have a chance to educate those who truly want to learn more and move on from those that know it all already. Lupus is not the end for me, far from it. It’s the very beginning.
***Wrote freehand with limited edits, Please be Kind***