Meeting My Hero: Remission Is Not What I Had Expected

Has anyone ever told you that you should never meet your hero? We often have an idea of who that person is, and then when we meet them, we’re sorely disappointed.

We’d hyped them up to be a perfect person. Then we discover a flawed human. The disappointment can be disheartening and can leave you feeling empty and believing that you’ve wasted your time.

This is how I feel about remission. I hadn’t realized it until one evening as I sat and sewed. I often meditate, but ironically, most of my biggest revelations come when I’m engaging in other activities that I find to be therapeutic.

I have previously shared that I am a self-certified “joy junkie.” However, for months, I have felt that I have become a blob of negativity. I’ve had a tough time with depression and started seeing a therapist shortly after my hospital stay last year. I have been battling on many levels to overcome this episode of depression, anxiety, and feeling rubbish overall.

I’ve taken extended breaks from social media since it seems to be a hoarding place for negativity. I have also taken a hiatus from most social activities. I’ve kept my biweekly coffee meetups because I love to talk business, and these gatherings provide an outlet for me to be social and participate in something enjoyable.

When I last visited the States, I decided to start accepting more invitations, and I did so immediately upon my return. However, I had to cancel each one for various reasons related to lupus. Yet, I’m in remission. Some hero!

I had expectations of remission. Perhaps it was my fault for not asking the right questions of the folks I’d interviewed who are in remission. When I received my diagnosis, some people said to me, “So-and-so has lupus, and they are living a normal life,” so I asked if I could contact that person. When I did, I often learned that they were not living a normal life.

Some of those who were in remission were following a mostly plant-based diet, so I decided to adopt a vegan lifestyle. I did not ask them what “remission” meant to them. I had some preconceived notions about my hero. I believed that it would show up, take all of my pain away, and remove my need for medications. I thought that when remission appeared, all would be right with the world. (Add rose-colored glasses and angels singing to my background soundtrack.) However, this has not been my experience, and I’m left feeling dismayed.

Last December, for the first time since my diagnosis, I was told that my bloodwork was “normal.” When I asked if this meant “remission numbers,” I was told “Yes.” Finally, my hero had shown up. I’d been chasing it all around the world, and I finally caught up with it in Mexico after a food elimination process that resulted in an entirely plant-based diet.

However, since those results, I’ve had a lung infection with violent coughing spells, my body has remained in continual pain, and my energy levels are in the dumpster more often than not. I did not equate any of my symptoms with the bad attitude that I’ve been battling along with depression and anxiety — until now. This realization was prompted by the thought that if remission doesn’t mean you feel better then why bother making changes.

I have been neglecting myself for months — and it’s time to stop. Remission, much like lupus, manifests itself in many ways. Though my bloodwork reveals it, I don’t feel the benefits. It doesn’t mean that I will always be in pain or need to take medications. I remember those who are living with the hero that I envision remission to be. I must keep forging ahead, not give up too soon. I hope that you will keep pushing and fighting, too.

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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.