Let's laugh at ourselves. Let's rant and cry. Let's be besties. Let's survive the messed up world of Bartonella, Chronic Lyme, Endometriosis, Fibromyalgia -- you know what? If you're chronic, come play spoons with me.
We re-blog and like, but we don’t often create. Why? Because we are trained to believe we have nothing to say.
The heroes of our stories do things. Disabled heroes cannot do. How are we then to be the heroes of our own stories? How can we see our journey as our own? If our stories don’t feel like our own, then they don’t feel real. If they aren’t real, then there is no consequence. If no consequence, there is no investment. Is that also true of how we think about our lives?
It is a challenge to write the truth of being disabled and remain entertaining enough to engage a readership. There are few adventures. There are no pictures of exotic locations or exciting venues, no travel. There is no visible external growth. The difficulty comes with showing the internal growth one learns from being forced to—essentially—pause life. A series of snapshots of fear, and pills, and pain, repeated daily until it becomes a blur. It would be easy to paint this as stagnation. But this isn’t the full truth. I am not romanticizing chronic illness. The ill know it is not romantic. But I am admitting value—intrinsic, actual value—in the lives of those who are unable to participate in capitalism and all that comes with it. This may seem obvious, but it needs to be said. Our self-esteem has often been forgotten entirely.
There is a place for us. As thinkers and creators of our life experience, yes, but also as sovereign people—individual consciousness’s—that have value in existing. That have the right to exist as much as anyone else. We are whole, and we grow as anyone grows—at our own pace, based on our experience. I hope we are able to make our voices heard, not just as advocates, but as human beings.
You have value. Your thoughts and experiences matter. You are the hero of your story; you are still and always the agent of your life.
Hey, so I’ve been away. And I could make excuses. The honest truth is that people with Lyme Disease are the victims of a lot of doubt, and I’ve gotten madder and madder about it. My gifs just weren’t giving me the same catharsis. Then something happened last week that set me off, and now, I’m in fighting shape again. SO: This is a lot of text, but please, if you or someone you know have Lyme, take a minute to read it. It’s got a hell of a tirade for doubters of your diagnosis. It’ll have you like
It’s important that you join the fight. After this post, regular gifs are set to return, with the occasional post for justice for Lyme. Content after the break. <3
About a week ago, Forbes published an article on Lyme disease. Yes, Forbes. The financial journal. This article uses a single (flawed) study to “prove” that antibiotics (which, anecdotally, allowed me to walk again after my diagnosis) are useless to treat Lyme disease. This piece so full of misinformation the author even got the number of new yearly cases wrong—by nearly 270,000. When commentators with Lyme replied to his “article”, he condescended to them, essentially calling them stupid. You read that right.
Then THIS hero came along and posted a reply so brilliant I’ve reproduced it here, so you can use it if ever someone questions your illness. If you ARE this hero and would like attribution, please contact me so I can give it to you.
“Consider this scenario, because it is analogous to what you are describing:
You broke your foot. You go to a doctor and the doctor is concerned, runs all tests except an X-ray and tells you that you’re perfectly fine and your phantom foot pain is the result of anxiety. You know that’s wrong and say so. He dismisses you. You go to another doctor convinced you’ve been maligned. You tell your doctor about the pain, the incident that caused it, and you ask whether it may be broken. You ask for an X-ray. The doctor scoffs and condescendingly tells you not to read information from the Internet. He suggests you see a therapist. Your foot swells. You are in excruciating pain. It turns purple, you can’t walk on it. You go to the ER. They are very worried, run the tests they have and tell you you’re fine and to go home and not think about it. Eventually you find a doctor who believes your foot is injured. She tells you to move it: you can’t. She suspects it’s broken. She orders X-rays that your insurance will not pay for. You find out your foot is broken. The doctor puts a cast on your foot and monitors it carefully because of the complex bone damage caused by ignoring and waking on it for so long. Your foot begins to heal.
Meanwhile, a federal agency declares that feet rarely break. When they do, they heal on their own with no need for medical intervention. They endorse studies that support this story, and they call this story “fact.” They malign all other research and launch a national campaign to make the public aware of doctors who are unnecessarily placing casts on feet that are perfectly fine. Your foot is healing. This makes no sense to you.
A reporter from a national financial publication writes an authoritative sounding article that contains factual errors and which omits important recent scientific studies that suggest casts are important to the healing of a broken foot and that an untreated break will cause further complications down the line. When other people in toe position comment on the story, equipped not only with more relevant and nuanced information but with their own personal experiences, the author, who has never broken a bone, patronizingly tells all of these people that despite their lives experiences they are too stupid to understand their own bodies’ illnesses and what treatment has effectively improved their health. The author tells them it isn’t their fault they are stupid and know their bodies less well than he does, but that evil doctors trying to sell casts are preying upon their stupidity and desperation.
I can’t imagine that you have any concept of how utterly condescending and patronizing you are to people whose health complications you have no way to relate to, but I am curious about what makes you believe you know better than we do about the reality of our own experiences–both the decline from Lyme and improvement from treatment. It’s stunningly ignorant, and aggressively so. In time you will have to accept that you were wrong here. I hope you’re human enough to feel remorse for that because your misguided words have consequences, and in case you can’t tell from the comments of every single person who has reacted to your story, you are completely wrong in your assumptions and offensive in your tone.”
What did I tell you? Are you doing it? I know I am.
This is the FORBES piece. I’m only linking it so that you can leave your thoughts as well. Please don’t give them the clicks without leaving a piece of your mind behind.
This is a HUFFINGTON POST piece that debunks the Forbes article, line by line. Please, read it and feel the nice, warm glow of justice. And please, show some love.
So I never post anything but Chronic Illness related stuff, but I have to this time. This is my cousin, Braiden. He’s 15, and from Lyme, Connecticut. While he doesn’t have Lyme, four members of his immediate family (including me) are fighting chronic Lyme disease. He is a sweet, talented kid, and he has been through a lot. He deserves this. And I wouldn’t be doing my part as family if I didn’t put this out there. Please, if you watch The Voice, vote for Braiden Sunshine. It’s incredible watching someone you love have their dreams come true.
