I was recently reading comments from one of the support groups and just kept thinking, “exactly,” and “I know that’s right,” and “YES!” So I decided I would share.
It seems the more we share about our illness, the more people have a need to feel sorry for us. The support group discussions I was so quick to agree with basically said: We don’t want, need, or care about others feeling sorry for us.
What we do care about is letting people know how we are affected so that if you are experiencing the same things we are, or you know someone who is and don’t know what is happening, you can learn about the symptoms and speak with your healthcare professional. We want awareness, not sympathy. We want progress with diagnosis and treatment.
I often hear people complaining about their jobs and their lives. They stress about bills they have to pay and about barely getting by. Many complain about illnesses that are not as serious as mine, and how their insurance doesn’t cover them. They live for the weekend and hate Mondays. They complain about their friends – or lack of friends – yet they feel sorry for me. I have my own brand of stress, don’t get me wrong. But I’m living a life many people wish for. Yet they still feel sorry for me.
The way that I see it, I’m battling an ugly disease. But no one on the face of the Earth is without problems. My problems are just different. I don’t feel sorry for someone who hates their job, nor do I feel sorry for myself. I certainly don’t need anyone else to feel this way. I feel empowered. I feel that I am doing things dictated by choices that I am free to make.
I’m not bound to a car or a mortgage payment, or to what others may think of me. I wake up when my eyes open. There is no alarm clock in my day. I go to sleep when my body says to sleep. And when I wake up, the work I do is work that I enjoy.
This kind of life doesn’t come with a steady paycheck like many of my friends have, but it also doesn’t come with disdain for my boss. It doesn’t come with the worries of a pink slip. I find it ironic that there are times when I worry that my obligations may not be met, yet I still do what I love. Others worry that their obligations will not be met, and they hate all of the other aspects of their lives. Yet they feel sorry for me.
When I share with others that lupus is doing a number on my body and my life, I usually follow up with something funny or informative. I share things about lupus because it almost always is misdiagnosed and, because of that, lives are being lost daily. If by sharing my experience I can help someone else be diagnosed faster or help eliminate this horrid disease as a possibility, then I will continue to shout about it.
I don’t just complain, so I’m not looking for you to pay me personal attention. I want you to consider the subject I’m discussing. I’m creating a new life and figuring out new things that I can love about the new life.
How often have we posed the question, “If you could start all over again knowing what you know now, what would you do?” That’s the life I’m living. (It’s not fun. If you’re going to feel sorry for me, here is where you should do that. LOL! Just kidding.)
But seriously, having to start pretty much everything over again, all at the same time, is not easy. But this is something people fantasize about, and I’m living it. Yet you feel sorry for me?
I get to pick a brand new life. Granted, the curse is chronic pain, but I left a life behind and now I get to keep my knowledge and start all over again.
So I ask: If you could do it all over again knowing what you know now, what would you do? Would you feel sorry for the person who gets that opportunity? I don’t think so. So stop feeling sorry for me and start paying attention to the subject. If you can share via word of mouth or through social media to help others, that would be time better spent. In fact, if you’re reading this now, at the left side of your screen are some social share buttons. Click and pass this on. Thanks!
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.