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