Defining What It Really Means to 'Be Positive' in My Battle With Lupus

My lupus battle began four years ago. For months, my limbs hurt so much I begged my husband to get a hack saw to remove them all, and I meant it.

During that time, I reached out to family and friends on Facebook because I needed help. I needed things done for us, I needed prayers and I needed connection to the outside world from my bed.

Most of the responses were tremendously loving and supportive. But some were not. Some were admonishments for me to be more positive. I was hurt by that. Even though I was willing to let go of my life just so the pain would stop, I held on day after day until relief finally came. Wasn’t that positive enough given the extraordinarily painful circumstances?

Since then, I have had numerous conversations with others about what it means to be positive. I found differing opinions, from plastering a smile on your face regardless of your circumstances to battling like a medieval warrior with a flaming sword.

I decided to look it up. I pulled out my trusty Webster’s New World Dictionary, Third College Edition, copyright 1988 by Simon and Schuster, Inc., p. 1053: positive. Turns out, it’s a rather lengthy definition. I am going to break down the adjective section, including examples from my own life.

1. formally or arbitrarily set; conventional; artificial – There certainly are plenty of arbitrary ideas about what it means to be positive.

2. definitely set; explicitly laid down; admitting of no question or modification; express; precise; specific – I am trying to express a specific definition of what it means to be positive with a chronic pain condition.

3. having the mind set or settled; confident; assured; overconfident or dogmatic – I became more confident once I got out of denial about my lupus.

4. showing resolution or agreement; affirmative; certain – I resolved to keep breathing in and out until things got better.

5. tending in the direction regarded as that of increase, progress, etc. – I worked with my doctors, took my meds as directed and educated myself about my disease.

6. making a definitive contribution; constructive – I separated fact from fiction when looking at alternative therapies and I found ways to continue advocating for survivors of sexual assault from my bed.

7. unrelated to anything else; independent of circumstances; absolute; unqualified – I clawed my way back to finding joy in the simple pleasures such as time with family and friends,  a beautiful sunset and the exchanging of the words “please” and “thank you.”

8. that has, or is considered as having, real existence in itself, not just in the absence of other attributes – I let go of lifelong dreams and goals no longer attainable and discovered new ones within myself. But that took time.

9. based, or asserted as based, on reality or facts – Denial gave lupus plenty of room to do serious damage to my body and my mind. Embracing my circumstances brought peace.

10. concerned only with real things and experiences; empirical; practical – I keep up with regularly scheduled lab tests and doctor appointments. I work with my doctors determining what works for me and what does not.

11. complete; absolute; out-and-out – This one gave the example of a positive fool. I believe plenty have called me a fool for being so open about my life. But many others have given me enough “positive” feedback to keep me going.

12. directed toward the source of a stimulus – This one gave the example of positive tropism. My life was definitely turned upside down. It was up to me to find a worthwhile direction to go from there. I believe I did.

13. of, generating, or charged with positive electricity; having a deficiency of electrons – Do I have an electrifying personality? I hope so.

14. of an adjective or adverb in its simplest, uninflected or unmodified form or degree; neither comparative nor superlative; of this degree – Deep down, I am still me.

15. designating a quantity greater than zero, or one to be added; plus – I am a whole person continuing to add to my being. Lupus has not diminished who I am.

16. demonstrating or proving the presence or existence of a condition, symptoms, bacteria, etc. – There was a definite sense of relief when the doctors gave me a firm diagnosis. Having a name for it helped give me direction.

17. with the light and shade corresponding to those of the subject – Such as a photograph. Lupus shed a light into the dark corners of my being I didn’t know existed. I learned about strengths within me previously underutilized. I gained a deeper acceptance of myself.

My definition of being positive is this: It isn’t hiding away for fear of how others will judge you. It’s about experiencing life, good and bad, to the best of your abilities; not despite your limitations but because of them. It’s about whatever it takes to keep you in the game.

What does it mean to be positive? It means: be you.