What Can We Do?
Do What You Can and Be Proud of It
I used to have an impressive job title. I could not do that job now, simply because of the long hours and level of stress that went with it.
If I tried, I am certain my health would suffer for it. I work from home now. It took years to build my freelancing workload up so that it provides enough, and finally I am pretty close.
I command myself to take pride in that. I am enough. I worked hard for eight years to be where I am. Just because it is not as “impressive” to the outside world shouldn’t make me question my achievements and value.
However you manage your work or even if you can no longer work because of lupus, never measure your value by this factor. Never.
Judge Your Parenting Gently
I am guilty of judging myself pretty harshly as a parent. I don’t want any of my children to feel I was not there for them, yet I know there have been times I was not. I feel guilt. Letting this go is one of my biggest challenges.
My mother had health issues since I was 13 years old and most of the time I sort of raised myself. I actually spent a lot of time caring for her, rather than the other way around.
Somewhere inside of me, that lost little girl is fighting against becoming the same kind of absent mother she grew up with.
But there are times I have failed at this. Lupus has me fighting against this absentee feeling almost every day.
There have been times when parenting with lupus has been too much and I have withdrawn into survival mode and let things slide. Sometimes you just need to try and get through the day and, honestly, teenagers can give you challenges that even a healthy person would want to run from.
I judge myself harshly about those times. Did I say the right thing? Did I make a difference to them? Did I say too much and hurt them? Was I kind while I was being firm?
This can occur with little ones too. I struggle with bedtime often and by the time I am done reading a story and turn out the light, I cannot bear the endless questions they ask designed to keep me there longer. I get cranky. I hate myself for being cranky.
But with lupus I think we need to cut ourselves a little slack. We are human. We can apologize for being cranky and then let it go.
If you are doing the best you can as a parent and self-evaluating your actions on a regular basis, then you probably are a great parent, despite the challenges of lupus. Stop judging yourself harshly.
Growing to Recognize Our Purpose
I believe that when we look back on our lives, what will matter most is if we made a difference in the lives of others; if we took our endless challenges and used them to become more.
That does not mean a corner office or a grand job title. That does not mean pretending our challenges did not exist.
It perhaps means we advocated for others with lupus. We used our voice to spread awareness so that a cure might someday be found. We raised money for research. We shared our heart with the people we loved and cared about.
Not some grandiose physical ability or agility — just our heart. People knew that we loved them.
What we are doing with our lives can be so much more that it was before lupus because it goes to a deeper level of importance, hopefully one you will grow to recognize and make your own.