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Why I Blog About Having Chronic Illnesses

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My name is Lisa.

I have lupus, gastroparesis, asthma, and I’m currently trudging through the process of being diagnosed with Ehlers-Danlos syndrome. I write about having multiple chronic illnesses.  I have a blog and I’m presently working on a book about the ridiculous things that happen to me because of my faulty immune system.

I’m a chatty person so I talk about lupus all the time. I refuse to hide my illnesses in a closet just because they might make someone uncomfortable. I also won’t apologize for talking about being sick. If you keep talking to me about that big promotion at work, I’m going to talk you about that big scan I had at the hospital. That is your life and this is mine. I’m not trying to bring you down, I’m trying to be honest with you.

If a stranger asks me in passing how I’m doing I will always respond, “Good, and you?” But if I know you and you ask me how I’m doing, I will tell you the truth. I will say things like, “Oh I’m full of lupus today, how are you?” Or maybe I will say, “My stomach is particularly paralyzed today, how’s your day going?”

I didn’t always feel this confident talking about my illness. I used to sugar coat the discussion because I felt uncomfortable about it all. If someone asked me, “What’s new?” I felt like it was pertinent to the conversation for me to mention the fact that I was just diagnosed with an incurable illness, so I would bring it into the conversation. And it was the most awkward thing for everyone.

I would start with, “Well, I have lupus”, and then they would be like, “Oh… oh no… I’m so sorry… oh God that’s awful!” Then I would feel really sorry for how sad I made them, and pat them on the shoulder in a comforting way. Trying to comfort them even more, I would say things like, “No, it’s OK. Really, it’s fine. I’m OK. I mean, I’m not OK, but I’m OK.”  Then the conversation would continue as I broke out the big guns by shrugging and saying, “It could be worse!”

Saying, “it could be worse” is actually the worst thing a healthy person could say to me, a sick person, yet I kept saying it to myself all the time. Then they would inevitably nod and say, “Yes, I guess so. At least it’s not cancer.” (Please don’t say that to people). And then I would boil the kettle so we could recover from the whole ordeal over a cup of tea.

I wasn’t always eager to talk about being sick. I guess I had to become better acquainted with lupus before I could comfortably work it into conversations. I used to be really careful not to talk about it too much, and I used to be really careful not to talk about it too much.

I was very conscious of how I came across to others. I wanted to be seen as that girl who does all of these amazing things, but who  also happens to have an awful disease. I wanted people to think of me and go, “Oh Lisa? Yeah, she just keeps on truckin’ doesn’t she?” I used to have a mantra that went like, “You are more than just your illness, you are more than just your illness.”

And then one day while ever so carefully and gently describing how much lupus has affected my life, someone interrupted me by trying to give me some public relations tips on how to handle my disease:

“You shouldn’t talk about lupus so much. You shouldn’t dwell on it. You have lupus, but don’t let lupus have you. Don’t let it control your life and your thoughts. The way you think really impacts your health, so the more you mention lupus the more lupus you will probably get.”

But I read between the lines and heard this:

“I feel uncomfortable when you talk about your illness. I can’t relate to you so its awkward and it makes me nervous. Because it is uncomfortable to me, you should hide this huge thing that impacts every aspect of your life from me so that we can have an easy breezy chat about kale smoothies and cat videos. Even though talking about this is probably helpful to you and takes a load off your shoulders, I think it would be easier for you to hide all of this really deep down inside of you so that I don’t have to come to terms with the fact that I don’t know how to deal with serious topics like this. I would rather you be uncomfortable than me be uncomfortable. It’s the least you could do for me, your healthy friend.”

And as soon as I heard that, “You have lupus but don’t let lupus have you” nonsense, a switch turned on inside of me. I thought, “You’ve got to be kidding me!!” and a fiery beast was unleashed from deep within me, whose new purpose in life was to talk about lupus all the time to normalize this conversation. I mean, at the time I probably smiled and nodded in response, but inside my head the wheels of change had begun to turn.

I realized that I’m more than just my illness, that’s obvious. It’s not like I go to job interviews with a resume that just states “Lisa Walters – lupus patient.” That resume is jam-packed full of interesting things. By saying, “You’re more than just your illness” I was really saying, “Your illness is kind of a black mark on you as a member of society, so make sure you highlight all the other things about yourself first and try not to bring up the fact that you’re sick.”

I sat back and realized that my illness has taken a lot from me, but there is one thing it has given me: a voice.

I knew I had to unapologetically talk about my illness because being sick isn’t something I should have to apologize for. I knew I had to change people’s perception of my illness from being the big scary elephant in the room. I wanted to make it less uncomfortable for all the  people out there who haven’t had to deal with heavy things before. So now I talk freely about my illness and disability, and I silence that inner voice that tells me I should probably cool it on the lupus talk. And I talk about sickness in as honest a way as I can. I will not wrap something like an incurable illness up in a pretty little bow to make other people feel better about it, but I will do my best to make it relatable to those who can’t really relate.

And I think that’s really important. I don’t want people to squirm or cringe when someone mentions their disease or disability. I don’t want to be surrounded by people who are incapable of just laying it out on the table and admitting that they don’t understand what it’s like. I want to be surrounded by people who know that we can change that by having a conversation. We can take disease and disability out of this unreachable, scary unknown if we just have a chat with one another. I essentially just want way less people telling me that it’s not okay for me to talk about something that, good or bad, is a big part of who I am.

The best way I know how to do all of that is by blogging. The internet is a magical place and I can’t think of a better outlet for me to try to remove that barrier between healthy and sick, able-bodied and disabled. Lots of people before me have done much better jobs of breaking down this barrier and normalizing the discussion of illness, but I’ll continue to do my part too.

If you’re one of those people doing your best to reduce the stigma, thank you. And if you aren’t, I sure hope you’ll join us.

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Originally published: February 20, 2017
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