Sometimes I think people forget that on the other side of the keyboard are other people. Things we would never say to someone in real life are often typed and sent without any regard for how the other person may feel because they can’t see us.
I am insanely open about my experience with lupus. No one who has met me over the past couple of years is unaware of what I’m battling. It’s not because I show up and introduce it, but it has been a huge part of everything I’ve done since my diagnosis. I was diagnosed in February 2016, and by August, I’d sold all of my belongings and moved to a foreign country to seek affordable and quality healthcare. When people ask what brought me to [insert country] — I’m on my third one — I tell them I moved because of a healthcare issue. It is a very big part of my story.
I share my experience in this column and on social media. I have special hashtags, am an administrator of online support groups, and talk about my experience on YouTube. When I get inbox messages, I will always respond to another sufferer unless they are saying things that I truly have no words for and would rather not engage. I also get emails from people who have no clue what this battle is about. I thought I would share a few things that I think are party fouls.
- I am a representative of a multilevel marketing company, and we have people who have been cured of lupus with our products.
No! You don’t! Lupus has no cure — if it did, the medical community and every single last one of us who are battling the disease would be beating a path to your door. We do not want people trying to capitalize on our illness. We pay our medical professionals enough; we aren’t going to pay you. Do you have great products? Maybe, but you lose me the minute you tell me you can cure me.
- Jesus is the answer. By his stripes you are healed.
No! First of all, not everyone believes in Jesus. Secondly, did he not know who I was when I got my diagnosis? Did he forget and allow me to get this illness? To push religion into the inbox of a stranger is about as cool as pushing politics into their inboxes — or your family vacation pictures. Do I know you?
- Lupus is a catch-all name they give to a pretend condition, so people who think they are sick feel justified in their complaints.
No! These failed kidneys, swollen heart linings, and fluid on these lungs mean that many of us have some insanely serious imaginations. I would like to invite my imagination to meet up with my bank account because it is producing some very real issues. Perhaps it can produce some very real dollars to pay for my imaginary condition.
These are just a few things that I have gotten in my inbox. When I initially got sick and started getting some of this, it really bothered me to the point of hurting my feelings. Now it just irks me and makes me shake my head. Please be considerate when you decide you are going to reach out to people via the internet. Your intentions may be good, but you need to know your audience. Think before you hit the send button. As we would say in sales: Read the room.
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.