The Price of Being Completely Understood

The Price of Being Completely Understood

As humans we long to have someone relate to what we’re going through, to be accepted and understood. For a very long time I didn’t have to work very hard to achieve this feeling. Nowadays, it’s something I want desperately, but I know that to have it comes at a price I can’t ask of anyone.

There’s a certain amount of comfort in the known. But, as there’s very little known about lupus, I find myself stuck in a state of discomfort. Though medicine works tirelessly to provide us with answers, there is still very little known about the black wolf that millions of people carry with them, each and every day.

I talk about lupus openly and with as many people as I can, but there’s always a certain part of the conversation where I hit an abrupt dead end, and I can pinpoint it as the exact moment someone asks about a cause and cure. It’s at this moment that I’m left dumbstruck and almost ashamed, as I’ve being rendered unknowledgeable about my own debilitating condition.

Doctors can tell me about the typical symptoms, the side affects of all the necessary medications and even how lupus is likely to affect my life and lifespan. But in no way does this mean they understand what it’s like to live with lupus.

I am surrounded by people who constantly try to understand what I go through as a lupus warrior, but there are so many times when I wish my best friend or my family could do more than just sympathize with me.

When I’m frustrated and emotional about my situation, feeling as if I’m actually crying parts of my heart and soul out of my eyes from the hurt my condition causes me, I think I want empathy. But if I’m completely honest, the only time I feel properly understood is when I’m talking to someone else with my illness – and I could never wish this hell on anyone, let alone my loved ones.

Every now and then the isolation of being different than the majority of the world haunts me, but I’d choose to wear the pain of isolation each and every day, as I know what the cost of empathy would be.

Parts of me will always long to be understood the way I used to be, to know that for the most part my experience was the same as everyone else’s. At the end of the day, acceptance and understanding are a basic human craving that everyone is prone to, and though I try often to pretend I’m superhuman, I’m not exempt from that.

Thanks to lupus, I’m destined to spend my life feeling different from almost everyone I know, and to likely never again feel like I properly belong anywhere. I’ll live my life walking the line of a predicament. I’ll never be able to shake the longing to be like everyone else and be understood, unable to bear having someone close to me be condemned with lupus, too.


Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.


  1. Eddie Phillips says:

    Hi Kristiana, sounds like you are having a rough time at the moment, and that is normal. Just as Lupus Warriors are normal, they just have more to contend with. I think society is to blame for the fact that anyone with a chronic illness is not normal, because they don’t fit in with the “normal” parameters of life, such as healthy, physically fit, emotionally fit and a wide range of “friends”.
    It is worse when it is family that makes you feel “different” we have recently had another big blue with my wife’s sister and it got to much for me and I threw her out of the house (figuratively), since then she has gone on a “woe is me, I don’t know what I have done” crusade around town. It is so bad that I am considering legal action as it is having a detrimental effect on Julie.
    Personally it has no affect on me, I spent 15 years in the British army dealing with all types so it is water off a duck’s back. However, when it affects a loved one or family member I get angry and fight back, and I now find that I am fighting back for other people.
    So if you need someone to talk to, let me know, don’t fight it on your own. Remember you are a Warrior.

    • Kristiana Page says:

      Hey Eddie,

      My columns are often a reflection of the fleeting thoughts that run through my incredibly analytical mind, and unfortunately they aren’t all as empowering and positive as I’d like them to be. Though they are a realistic expression of my feelings they’re not all ones that I hold on to, however I still write about many of them as I know they have a valid place within the community!
      I understand the struggle your wife faces and I’m sorry to hear that it’s had such a negative affect on her, that’s terrible!
      Thank-you for reaching out to me I appreciate that, I apologise for not getting back to you for quite awhile I let all the comments pile up quite a bit!

      All the best to both you and, of course, your wife!
      Kristi x

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