Where Are the Manuals for Life?

People tease about how there are no manuals for rearing kids. Well, there is no manual on how to navigate an illness like lupus, either. Everyone is simply winging it and hoping they are making the right decisions.

It seems lupus is always delivering something new, with no instructions on how to deal with it. With each new delivery comes extra parts that don’t fit. Without a manual, there’s no way to know if it’s put together correctly — until it falls apart.

In late January, I went to the doctor for a follow-up visit that turned into a two-week stay in the hospital and a four-week stint at a 24-hour rehabilitation center. This stay was my longest yet. Part of my issue was caused by stubbornness. I had lost faith in doctors being able to find a way to relieve my pain, so I’d stopped going to see them. I also stopped asking for or accepting help because I thought I could manage if I pushed a little harder.

I withheld information from my adult children. As a mother, I am still trying to preserve their mental health and peace of mind. For myself, I am working to keep my head above water regarding my mental and physical health. As a warrior, I want to preserve the right to battle the disease in my way.

But I am reminded that my decisions affect my loved ones. Everyone involved is feeling as if they are not being considered, and yet I am the one who is in the fight for my life. I want to stay here, but I have accepted the probability that I will lose the battle.

I am looking at treatments I hadn’t considered before. From the outset, my goal with this disease was remission. Once I was told I had gotten there, I had great expectations. But they were never met, and 2019 was one of my most difficult years. I had to work to accept that this disease — like me — is an overachiever. I laugh and tell myself to stop trying to outdo your best lupus!

My family members hear good things from the doctors and are optimistic. I hear good things from the doctors and think to myself, “Been there, done that.” I expect the best but prepare for the worst. I try to take care of worst-case solutions, and that allows me to focus on the positive and to keep smiling.

This stay was a wake-up call. It allowed me to have difficult conversations with my children. My family feels as if the situation is imploding, and my heart breaks at their heartache. I am being asked to give them time. But my process is to handle things right away so that I can move forward.

I am left in a new place that I feel will hinder my ability to recover. The more I fight for what I am desperate to have, the more resistance I meet. Things look good from their perspective and they think we have time.

Being a parent, an adult, and someone with a chronic illness doesn’t come with a manual. I sure wish it did.

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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.