“We are the 300,000+” is part of the problem

Hello everyone-

I haven’t written a blog post in a while, nor have been active on social media; my cat Willa, who I have had for 17 years, had gotten sick last week on Thanksgiving. She continues to hang in there and I have been with her 24/7. This has truly been one of the hardest things I’ve ever had to go through, but with prayers and the outpouring love and support I’ve received from the Lyme community, family & friends, I too am hanging in there. I cannot thank you all for enough for your kind words, you have all been there with me through the good and the bad.

This is the first time within a week I’ve been able to do something other than cry- if Willa could talk, I know she would be telling me to stop worrying about her- so for now I’m getting it together because this is something very important I wanted all of you to know

Within the last month I heard about this campaign called “We are the 300,000+” It is described it as this:

“‘We are the 300,000+’ is a movement dedicated to raising awareness about the worldwide Lyme epidemic that is being ignored by the CDC and HMOs. Lyme patients from around the world are standing up to demand change.”

Being all about spreading awareness about Lyme disease and other tick-borne illnesses, I happily wanted to take part in it…or so I thought. What we were asked to do was download a sign from their website, fill in our info, either print it out and take a picture with it, or what I did, added it to a picture of me.

Here is the photo I submitted for the campaign:

I am 1 of 300,000

To my surprise, I received this email after submitting the photo above:

Email from 300,000 campaign

Thank you, I too think this is a very nice picture of me and NO, I WILL NOT BE SENDING ANOTHER PHOTO. I am not a person to take to the internet or blog about something that has outraged me, not even with all the controversy surrounding Lyme, but this upset me very, very much.

While I think this person/all those involved with this campaign have good intentions, and I do not discourage anyone from participating in it, but I felt the need to share this situation with others. Personally, what has been the hardest part of dealing with Lyme disease, co-infections and all the illnesses that I have developed from living with them for so long (and going untreated), is the fact that many people don’t believe me because I suffer from many invisible illnesses.

JUST BECAUSE I DON’T LOOK SICK, DOESN’T MEAN I’M NOT.  

Through the Lyme community, I have never had to justify being sick because they too have been in similar situations. Not only those who have Lyme disease but others who suffer from other invisible illnesses like Narcolepsy, Chronic Fatigue Syndrome, Fibromyalgia, the list goes on-

The fact that I’m being asked to send in a different picture where it “appears I am suffering” would go against many things I am fighting for- and for the record, this picture was taken 2 years ago, when I had a PICC line in and one of the few times I never had to explain to people I was sick; they never questioned it because I had an IV in my arm; but 5 months later after it was removed, I “wasn’t sick.”

I’ve been sick for over 12 years. I do not have a PICC line in anymore and have had great improvement using alternative medicine, all of which is not covered by my insurance company. I am not able to work, go to school, so I have no income, no job, nothing to my name, due to the illnesses I’ve developed from Lyme disease. I’m 24, almost 25 years old, and I’m dependent on my family, who struggle to make ends meet as it is. Through a picture, you obviously won’t know my story, but if I’ve learned anything from those who struggle with Lyme, any chronic illness and/or invisible illness, is that they are some of the toughest, strongest, bravest people I have ever met; some may fit society’s definition of “looking sick” and others may not; to me it does not matter. When you are sick, you’re sick. I could have easily submitted a picture where I am not smiling and “look sick” but that I feel, is just giving non-believers what they want to see. Lyme disease and all invisible illnesses are not going away. I can only hope that those who think or believe that if someone does not look sick, they are not sick, to learn to be more open-minded and not judge others by their appearances.

For anyone with an invisible illness, keep smiling through the mental and physical pain.

So that is my response to that e-mail.

It’s very sad that Lyme advocates, for example John Donnally- you probably shouldn’t send in any pictures of you biking across the U.S. in your efforts to spread awareness about Lyme disease- your general appearance may not show others why Lyme disease is a growing and serious epidemic.

Thank you to the TBDA- when taking part in their Bite Back For A Cure Campaign, they never asked me for a different picture;

Support Research

 

A big thank you to Christine Miserandino who has created “The Spoon Theory”, in efforts to explain to others what it’s like to live with an invisible illness- you have given me strength to keep this blog post up;

And I also want to thank my boyfriend; you have reminded me that I need to stand up for what I believe in and it’s not always going to be easy, but in the end, I will feel good about myself and proud

In case I did not make this clear, it is not my intention to hurt this campaign, nor the person/persons involved in running it and those who participate in it. I do hope it is successful in shedding light upon this growing epidemic, but I will not take part in it. I am 1 of 300,000 and no one should ever have to experience what it is like. 

Sharing what it is like to live with Lyme disease & other chronic illnesses to spread awareness; health advocate;

6 Comments

  1. Hi Stacie,

    I’m not sure if this is the second time I posted this. I kind of got bumped off of the website when I first tried to submit my comment. My apologies if this is a duplicate.

    I think you may have a misunderstanding about the letter you received. As a Lyme sufferer for 41 years, and having undergone 10 years of antibiotic treatment and many other kinds of therapies, I know what you mean when you say it’s like having an invisible disease.

    People are always telling me that I look good. If they only knew how I felt when my internal organs and limbs are shaking incessantly all day and all night, they would not say that. So I know where you’re coming from. At least at Lyme support groups I don’t have to explain that even though I may look good, I often feel terrible. I feel internal tremors, I’m sitting on my hands so they don’t visably shake, and my feet are cramping, and I’m having an anxiety attack, yet I continue my conversation about the weather.

    I’m one of the organizers of the photo campaign. In fact, it was my idea to have patients hold a sign. I don’t think the author of the letter to you doubted that you are sick. It’s just that we have received a number of photographs where people instinctually, reflexively, smile for the camera. We all do that. We are survivors, most of us, and we soldier on. Many of us do not want to inconvenience others, even despite the fact that we are sick and need help. So we walk around with our ports installed in our chests or our PICC lines installed in our arms, and we spend 2 to 4 hours a day with intravenous antibiotics going into us, leashed to a drip line and pole.

    With the photograph campaign, we are hoping that our collection of photographs will convey to viewers who may not understand Lyme disease, that we are really suffering. We want to the photographs to be sort of an “inside look” of what we have to go through, and how we feel. We are eventually going to print them all out and send them to news organizations in big boxes so they will better understand the tragedy of Lyme disease.

    I hope this explains a little more why you received the letter asking for an different photograph. I wish you well on your Lyme journey.

    By the way, I have a Lyme blog also. Bobcowart(dot)blogspot(.)com.
    Congratulations for doing yours. I think it’s really important work.

    • Bob- Thank you for complimenting my blog, as I’m sure you know, it does take a lot of time and effort to put together and manage. While I do understand in part where you are coming from, I think a campaign showing others “an inside look” or pictures of those who suffer from Lyme and co-infections that may fit whatever society’s definition of “looking sick” would only hurt those who “do not look sick.” I do not think the campaign should discriminate and choose photos when everyone who is going out of their way to not only submit them has Lyme and/or tick-borne diseases. As I mention, I not only continue to struggle with people telling me “I don’t look sick” but to submit a photo where I am not smiling or what not, would only go against everything I have fought for. All invisible illnesses, not just Lyme, are not going away and all pictures should be included. If people do not believe in Lyme or believe someone is not sick because they do not look sick, I only hope that they one day aren’t so narrow minded and are not so quick to judge others by their appearance. Unfortunately, after several other emails with this individual (even though the email is written using “we” and not “I”), my opinion has not changed.

  2. WOW. I can’t believe they told you that!!! If there’s one thing that drives me crazy about having Lyme is that people are always telling me, “But you don’t look sick/disabled!” It’s very well possible to look beautiful and still have your body be a war zone. This project is perpetuating the stereotype that to be considered sick/disabled, you must look like hell. My Lyme is almost always invisible, and when it isn’t, I’m not likely to take a freaking picture of it! Thanks for sharing this, I definitely won’t be sending in a picture now.

  3. Thanks for explaining further, Stacie. I am beginning to understand your point a little better. Coincidentally, I just attended a big event in San Francisco yesterday, the ordination of a friend into the Episcopal priesthood. I had to wear a suit, get all fixed up and trek to SF. A lot of old friends attended. At the reception after the service, almost everyone remarked on how well I looked. They all seem to want to say that, and believe it. Perhaps for their own relief, I wonder? Maybe they want to be allowed to stop worrying about me. If I’m better, then perhaps they would know that late Lyme has a cure, or Parkinsonism doesn’t always means Parkinson’s. I’m sure there is some true empathy behind their comments, too. However, they rarely follow their observation by asking “I know appearances can be deceiving. How do you feel?” Sometimes I just let it go. For closer friends, though, I will follow up with more detail, including how funky I do feel.

    I’ve been thinking a lot about your comment, Stacie, and of the others who have written in response. I do think it’s important that people around us, including doctors, get it that we can look ok and still have a volcano of exploding symptoms that defy description raging inside of us. I just posted an article on by blog today about some research that suggests that emotional issues such as depression and even bipolar disorder may be caused by inflammation and is a body disorder, not so much a ‘mental’ disorder. The example used was how anybody feels after a few days of having a flu. Basically, depressed. I certainly feel like I have a flu (or worse) inside, without the fever, runny nose, coughing, etc. all the time. I do have the headache, though, and muscle tenderness, blurry thinking, sleep issues, and depression. But since I don’t display the hallmark outward symptoms of a flu, nobody knows it’s going on.

    I recently went to a GI doc (an ID doc sent me, after I recently got out of the hospital with sepsis that resulted from an infected port). I carried with me a GI report from a DiagnosTechs lab stool test. The lab reported I had elevated antibodies for filarial worms, trichinella, H. pylori, amoebas, and a few other goodies. The GI looked at me, asked if I had diarrhea. I said “No”. He said, “Then you have no reason to be here. This is a waste of time. We don’t treat if you don’t have diarrhea.” I tried to explain that, in the context of malaise and Lyme, these infections could be confounding factors. I didn’t seem to be digesting well, I had lots of gas, belching, and bloating. He dismissed it all, then dismissed me, telling me I shouldn’t worry so much. It felt like just another version of “You don’t look sick, so how could you be sick? It’s all in your head.”

    I guess I’m saying I understand that if we want to combat this kind of discrimination, maybe we have to be ourselves, look however we look, which sometimes, for some of us, can be ‘good,’ as judged by the culture. We need to continue to educate both the masses and the medical community. I can see how it could reinforce the stereotype if only sad and depressed looking patients were posted in the photos.

    I’m not speaking for the 300,000+ group here. I’m speaking just for myself.

    • Bob,

      I am truly so sorry for the way that GI doctor treated you. Reading your comment, my jaw dropped because I can’t believe the doc would dismiss not only your concerns (personally, I know my body very well, so if I feel something isn’t right, I trust my instincts), but your test results just because you were not experiencing one particular symptom. Those kinds of doctors appointments always upset me, even though I’ve had many of them, but hope you are not discouraged by it and continue to look for another doctor.

      I really hope you are able to get some answers and feel better soon! When it comes to people saying things like, “Oh you look so good” or “…but you don’t look sick” it really can depend on who you are talking to, like you mentioned and your mood. Many of times, but especially when I am trying to spread awareness or talk about my story with others/the community, I say before they ask usually, I know I may not look sick, but don’t let that fool you- something along those lines. For me, my worst and most debilitating symptom is my fatigue, having several sleep disorders which have stemmed from living with tick-borne diseases so long without proper treatment. I have my own analogy that I use to describe my fatigue and/or explain my invisible illnesses using the spoon theory as an example. There are times when I don’t feel like explaining and just say I’m doing okay, taking it day by day, something like that. But because of my personal struggles surrounding living with invisible illnesses, I always try to explain it to people. I’m very lucky that my family and close friends are very understanding of everything so I don’t have to keep explaining myself; though it did take a while for them to understand.

      I really appreciate you taking the time to talk more about my feelings on this campaign and for especially looking at it from a different point of view which I know is not always easy. To be honest, it was quite difficult to stand my ground on this because I did not want to seem disrespectful to all those involved with this campaign- but I needed to stand up for myself as well as all those who invisible illnesses/Lyme.

      With that being said, I understand that certain pictures are wanted because of the terrible things that are said/individuals who don’t believe a person is sick if they do not look sick- unfortunately, there will always be people who judge or will think what they want, but it will never stop us from wanting to show them what it’s really like.

      Again, I hope you feel better and I hope the 300,000+ group will all be open minded to hearing and listening to my point of view too. They do not have to agree but hope that they will at least look at all sides

  4. Stacie, thanks so much for highlighting this issue on your blog. I hate that you had to experience the negative feelings that undoubtedly accompanied this encounter, but I’m glad you’ve used it as an opportunity to make your voice (and what I’m sure are sentiments many of us Lymies share) heard. As always, thanks for all the activism you do and awareness you raise with your blog, with twitter, with LymeChat–you’re making a difference!

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