One of my blog readers messaged me earlier this week to tell me that my blog has helped her (you da best). She told me that she has a lot of trouble talking openly about her illness and how it affects her, and because I am so open about my own health it has given her a bit of a push. She asked me how I got to a place where I am comfortable and chatty about my illnesses and disability. “You make it seem so easy,” I was told. I’ve actually gotten that quite a bit, and while I love a good dose of validation and pat on the back just as much as the next self-centred blogger, it’s not entirely true.
I will let you all in on a little secret: this openness took lots of time. Being open and honest about how sick I am did not happen right away. I used to keep it all bottled up inside in a knotted pit at the bottom of my stomach, and I only gave a select few people a brief glimpse into what I was thinking and feeling. It’s definitely a process.
You know me right now as someone who chats regularly and fairly loudly about what its like living with multiple chronic illnesses. In this current moment I am someone who refuses 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?” because that’s just how it is. 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?”
But I didn’t always feel this confident talking about my illness. When I would even let myself bring it up at all, I used to sugar coat the discussion because the whole thing made me feel all squirrelly inside. If someone asked me “what’s new?” I almost always said “oh, same old same old” while on the inside I was screaming “ACTUALLY I JUST FOUND OUT I HAVE AN INCURABLE DISEASE AND I’M PRETTY DAMN SCARED!!!” But over time, when the fates lined up perfectly, and I was talking to the right person, “what’s new?” would actually prompt me to bring my new health concerns into the conversation. And it was the most awkward thing for everyone. I would start with “well, I’m pretty sure I have multiple sclerosis” (because that was what it seemed to be a few years ago) and then they would do that thing people always do in response to finding out someone they care about is sick, they would be like “oh…oh no…I’m so sorry…oh god that’s awful!” And then I would feel really sorry for how sad I made them and pat them on the shoulder in a comforting way. And then I would say things like “oh no, it’s okay. Really, it’s fine. I’m okay. I mean, I’m not okay, but I’m okay.” And then I would break 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 would just keep doing 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.
So I clearly wasn’t always eager to talk about being sick. I kept it a secret for a long time, and felt a sense of shame when I did say something. I felt like it was associated with a weakness of character (all complete total bullshit, of course). I guess I had to become better acquainted with how my body was changing before I could comfortably work it into conversations.
By the time I got the lupus diagnosis, I was definitely more comfortable with the discussion. I recognized the error in my ways, knew for certain there should be no shame attached to being sick, but communicating about my disease was still a work in progress. 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 – sidenote – also happens to have a pretty shitty 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 this “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 feed me some David Wolfe nonsense on how to handle my disease. This is a paraphrase:
“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.”
Just FYI, if you’re a healthy person, I will just warn you now that those are all comments that get you blacklisted by the chronic illness community. We can tell ourselves that we have lupus but we shouldn’t let it have us, but when you tell us that you just sound pompous.
So this person said all of those things to me 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 AF and it makes me nervous. Because this sickness talk is not agreeing with 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 simple things like 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 know this is a big part of your life but I would rather if you hid it from me, you know, out of politeness. 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” bullshit, a switch turned on inside of me. I thought “oh hellll no” 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 thought “What Would Leslie Knope Do?” And I knew the answer was not “shy away from this just because it makes someone uncomfortable.” Because I was having some sort of Eat Pray Love-esque epiphany, I also realized that of course 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 concentrating solely on this “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.” Some people use that mantra in an empowering way, but I was not doing that.
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 precious people out there who haven’t had to deal with heavy things because they are hashtag blessed.
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 also like to joke about it because laughter is really important to me. I made a promise to myself that I would do my best to make my illness 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. Blogging about it is what brought me to this comfort level and has allowed me to speak more freely about it too. So it didn’t happen overnight for me. There were a lot of baby steps, and sometimes I went backwards and had to work my way up to being able to speak freely about my health again. It’s not easy, it still gives me heartburn sometimes, but I know now that it’s worth it. If I can do this one tiny little thing to help shed light on the fact that sick and disabled people ARE JUST REGULAR PEOPLE AND NOT A COLLECTIVE GROUP TO BE SCARED OF, then I will do it.
And if you aren’t there yet, if you want to talk about it but you don’t feel ready, that’s totally okay. You have to do what feels right for you, at your own speed. That’s exactly what I did.
And maybe you have a chronic illness and you have no desire to talk to anyone about it, and that’s cool too. As long as you’re doing what is right for you, I’m a happy camper.
So that’s my story. I didn’t just wake up one day as a healthy person, then find out I’m sick, and then immediately feel okay with it all and put myself out there to show people what being sick is like. My immediate response to “you have a disease” was not “I MUST ERASE THE STIGMA!” It took lots of time, lots of hand holding from good people, plenty of tears, and buckets of Tums.