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.
Lisa EhrmanFebruary 15, 2017 at 6:16 pm (6 years ago)
Great post1 I talk about it openly, too. But, there are some people that won’t let me. When I’m around them, I just keep quiet. thanks for sharing so much of yourself.
Team StarlaFebruary 15, 2017 at 6:17 pm (6 years ago)
Yes, I am so glad you posted this. I get all the time and even from people and even other transplant patients that dont understand why I still talk about my liver disease and transplant. Even after 25 years, it still effects my life, more so actually. For me, talking about it helps me and if it helps someone else too then I will keep telling my story.
DianaFebruary 15, 2017 at 10:54 pm (6 years ago)
Thank you so very much for putting into words what I have not been able to say to friends & family.
TheOriginalPhoenixFebruary 16, 2017 at 1:39 am (6 years ago)
Wow this is a very insightful post, it’s my first time seeing your blog but I’m already blown away. That part you mentioned where people tell you you’re more than your illness was particularly interesting to me. I know a lot of people who take comfort in that statement but I never thought it could come across as so derogatory. Thank you for writing this 🙂
SherylFebruary 16, 2017 at 4:52 am (6 years ago)
Great post! Agree with you that we need to speak about such topics more openly. It not only helps break stigmas due to ignorance, but also builds meaningful connections, and fuels ideas for improvement in terms of healthcare and society 🙂
LydiaFebruary 16, 2017 at 8:29 am (6 years ago)
This is an awesome post! I made up my mind a long time ago that I was going to be proactive regarding my illnesses. While some people backed away, I believe I gained respect from others and while they couldn’t necessarily relate to or understand what I was going through, they at least were not negative.
TerryFebruary 16, 2017 at 11:00 am (6 years ago)
Oh how I love this post! We could totally become best friends – ha! No, seriously!! Love your writing style. Please keep sharing. I too feel differently about the statement “…you are not your illness.” I am in the process of writing a blog post reflecting my take on that view of one’s illness. To each their own, right?! Thank you again, for sharing yourself so honestly. Quite refreshing! Hugs.
DonnaFebruary 16, 2017 at 12:17 pm (6 years ago)
This is a great post Lisa! I think I needed to read this today too. Because I have 2 posts in my drafts folder. One is an update post on how my treatment for Lyme is going. The other is a post on how I couldn’t quite bring myself
to hit publish on the treatment update post. But you’ve reminded me of all the reasons why we need to talk openly about stuff.
damselinadressFebruary 16, 2017 at 12:22 pm (6 years ago)
Yay!!! I’m glad my post helped you! I look forward to reading both of your posts 🙂
KristianneFebruary 16, 2017 at 12:21 pm (6 years ago)
You’re honesty, openness, and willingness to talk and share about your illness is truly a blessing for many. Everyone is either directly or indirectly affected by illness of some form or another wheather they like to admit it or not. I too battle illness each and everyday and I’m truly grateful for those who allow me to be so open and brutally honest. Illness exists in many forms and unfortunately it isn’t going to disappear. I look forward to reading your blog and in that being reminded that I don’t suffer my illness everyday but rather I battle my illness everyday. I like to believe that there will come a time when stigma will not be attached to any illness.
MaddieFebruary 16, 2017 at 5:36 pm (6 years ago)
Funny, I just hit the Facebook share button and then X’ed out–I couldn’t bring myself to share this great, all too true post. And that makes me so sad. One day very soon I hope to progress far enough in my own confidence and illness to be able to do so. Until then, so grateful just knowing there are articles like these out there getting shared, and knowing I am not alone in this predicament. Love your writing and cheery memes. So relatable. Thank you!
SorchaFebruary 17, 2017 at 6:30 am (6 years ago)
I have never been someone who shares a lot of personal info easily but I’ve had to become that person in the last year because of having Ehlers-Danlos Syndrome. I thought my good friends were down with it and understood the difficulties of living with a disability but I’ve had a few interactions in the past couple of months that included phrases like “we bend over backwards to include you” and “fine you win the illness competition” which makes me not want to discuss what I go through every day. It’s hard feeling like if you don’t talk about it people assume it’s not happening but if you do talk about it you annoy them.
Katarina ZulakFebruary 17, 2017 at 6:14 pm (6 years ago)
This is a fantastic article. I still struggle with “making it ok” when talking to friends and family about my illness. Recently I’ve been trying to be honest about the challenges but still ending on the things I’m hoping will help or the positive steps I’ve taken. The mixed bag approach (some bad, some good) seems to make it easier to talk about. It seems to help friends or family see my illness less in black or white (hopeless or “you’ll overcome it and completely recover soon!”). I definitely love the internet for connecting all of us with chronic illnesses and am really glad I stumbled on to your blog today!
PhoebeFebruary 18, 2017 at 12:56 pm (6 years ago)
I absolutely bloody love this post, and I love your attitude. I’m all for sharing, that’s how we raise awareness of our illnesses. I blog too, and it’s helped me tremendously. Like you I didn’t start out so willing to share, but I’m so glad I do now.
JaneFebruary 18, 2017 at 2:07 pm (6 years ago)
This article did me so much good. I feel that there are some people who love me who cannot accept the reality of what is going on with my body. Hey, I don’t like it either, but it is a part of me. If I can accept the reality, so can they.
Invisibly MeMarch 1, 2017 at 7:14 pm (6 years ago)
Very well said! ” I want to be surrounded by people who know that we can change that by having a conversation.” Bit by bit, reaching out, taking away the embarrassment/ignorance/fear/shame from illnesses and disabilities, and becoming more confident in being open and sharing conversations, things will hopefully start to turn around in society in terms of how illness is viewed and treated. Great post!
Endo AlienMarch 5, 2017 at 7:44 am (6 years ago)
This is a truly amazing article and you really share yourself as well as your whole experience.
I love that this community has so many other people talking openly, honestly and freely about their chronic conditions – the good, the bad and the rest. It’s definitely the healthiest way to move forward and continue to create more awareness.
It was really a gripping read and I can imagine this helping a lot of people
Thanks for sharing <3
MillieMarch 17, 2017 at 11:27 pm (6 years ago)
Wow! I am someone who has a terrible time sharing anything about my illness, and can’t imagine telling people the truth about how I feel. But after reading your article I might rethink that stance. It sounds so scary and out there, but after having been in the situation where other people are uncomfortable with my illness, I agree that we need more education to erase the stigma.
Heather M.March 27, 2017 at 5:27 pm (6 years ago)
Hi! I just stumbled upon your blog and wanted to say thank you for your perspective! I am 29 now but was diagnosed with lupus (and fibro, POTS, and raynauds) as a teenager. For many years I kept it hidden so I could more easily pretend to be “normal” like my peers. Now that I’m a bit more mature, I realized it’s ridiculous to put on a facade of being something I’m not to make other people more comfortable. My lupus isn’t going away, so now I am very open about how my life is much different than most of my friends. Side note- I am obsessed with Leslie Knope and Parks and Rec so thank you for incorporating her in to this article!