The Case for Autoimmunity
I have Hashimoto’s Thyroiditis.
Or do I?
That’s my diagnosis, but what I actually have is Autoimmunity.
Hashimoto’s is not a disease. It is a symptom of a disease.
This fact seems to be lost on most doctors and many autoimmune patients.
Hashimoto’s is a symptom of autoimmunity in my thyroid just as leukemia is a symptom of cancer in the blood. The location should not change the diagnosis. It doesn’t become a different disease and not cancer if it moves to the lungs or bones.
Why is it important?
Who cares what you call it?
Imagine if cancer wasn’t considered a single disease.
Imagine that one doctor studied leukemia parttime, another doctor kind of studied thyroid cancer but mostly treated diabetes, another doctor sorta studied and treated bone cancer but usually he did general practice work.
Brain cancer wasn’t even considered a real disease by 75% of doctors
The government said that lung disease didn’t exist and that you certainly couldn’t get it from smoking.
Some doctors would refuse to see you if you had a cancer diagnosis.
Insurance refused to pay for cancer treatments, and so patients had to pay tens of thousands of dollars out of pocket.
No one specialized in it. Oncology as a medical field didn’t exist. Doctors just did their best to guess how to treat the condition based on the limited research available, if they would treat you at all.
Many doctors only treated the symptoms of cancer with basic treatments like painkillers, antidepressants, and heartburn medication.
There was no standard treatment for cancer, no heavily-funded research, only fringe nonprofits trying to raise awareness.
Image that a large part of the population and even many doctors considered cancer to be a fake diagnosis.
Now imagine that one out of every five women in the US was suffering from cancer.
Imagine going to the emergency room for a complication of cancer and, instead of being helped, the staff argue about whether your diagnosis is legitimate and criticize your doctor and how he is treating you.
Imagine being horribly sick with cancer and doctors making you feel ashamed and embarrassed instead of helping you. Imagine them yelling at you and criticizing you publicly.
Imagine being kicked out of a doctor’s clinic because you have cancer.
Imagine being told that the doctor refused to even try to treat your treatable cancer and just sent you home with painkillers.
Imagine having one kind of cancer, then getting another kind, and the doctor says there’s nothing that can be done, no treatment to stop it from spreading, so they won’t even try. Or worse yet, they blame the condition on something you did or accuse you of making it up or say it’s because you’re overweight.
Imagine being in a store and someone asks you why you’re limping; when you say you have cancer in your foot, they laugh at you and mock you because they say cancer is fake.
Welcome to the world of autoimmunity.
What I just described is what’s happening to millions of people with autoimmune diseases across the country on a daily basis.
Everyone has heard of cancer. but –even if people have heard about a few autoimmune diseases– they really don’t know what they are and certainly haven’t heard the term autoimmunity.
In both cancer and autoimmunity, your body is being attacked by itself.
If someone has cancer which is killing them quickly, the community and church rally around them.
If someone has autoimmunity which is surely killing them but just a little slower, people ignore them. The church and community doesn’t come running to their aid. In fact, they are often criticized and sometimes even excluded.
More people suffer from autoimmunity than suffer from cancer.
I’m not downplaying the significance of cancer. Rather, I’m saying that autoimmunity is just as big a deal and should be treated with the same seriousness. Did you know that 14 million people in the USA have cancer and 50 million have autoimmunity (that’s only the diagnosed cases)?
People are dying. And it seems to largely go unnoticed.
It is true that the rate of speedy death is greater in cancer patients, but 3.5 times as many people have autoimmunity that’s slowly dragging them to their death, and they basically go ignored.
The collective medical community seems to have given autoimmunity a great big shrug.
(Again, I am not downplaying the significance of cancer, only trying to raise awareness of autoimmunity.)
What we need is a dedicated medical discipline. There should be doctors that just study autoimmunity. A whole field of medical professionals and extensive research.
There should be whole clinics and research facilities. Hospitals should have wings dedicated to the treatment of autoimmunity.
There should be well-documented treatment plans and courses. You should be able to exhaust all avenues even trials and alternatives without the medical community turning on you.
You should not be treated like you have fake a illness. You should not be given the bush-off and told to just live with the symptoms until they kill you. Insurance companies should not be able to refuse you treatment of your life-threatening illness.
Imagine if one person with leukemia argued with another person with brain cancer about whose disease was worse. Imagine that they treated it like a competition instead of realizing that they basically have the same condition that’s attacking a different part of their body. I’ve seen this kind of discussion as someone with Type 1 diabetes (autoimmunity) belittles someone with Lupus (autoimmunity) or MS (autoimmunity). I’ve actually seen arguments about whose disease is worse.
News flash: we all have the same disease: autoimmunity.
I have had people argue with me that I don’t have Hashimotos. They say it must be Lupus or Lyme or something else. Honestly, it doesn’t really matter what you call my symptoms.
It is all semantics.
My body is attacking itself: I have autoimmunity.
Our conditions should unite us, not pit us against each other.
We represent a huge part of the population in America. United, we are a force to be reckoned with!
We need to realize we’re in this together.
We need to demand to be taken seriously.
Autoimmunity is in its infancy as a field of research. Although Hashimoto’s, the first autoimmune disease discovered, was identified in the early 1900s, not a lot of research was done and the treatment was basically just to medicate the low thyroid symptoms.
While some research was done into individual types of autoimmunity, it’s only been within the last decade or so that these illnesses as a whole group have really started being taken seriously.
Cancer and autoimmunity are not that different, depending on how you look at it. Both are conditions where the body turns on itself. Both are not contagious and could develop in anyone.
In cancer, your cells mutate and start attacking your body. In autoimmunity, your cells are not mutated, but they misidentify part of your body as a foreign object and attack it.
In both cases, you’re likely to die from complications if the condition.
Cancer and autoimmunity are cousins of sorts. The body is attacking and harming itself.
There you have it.
I think we need to educate people on what autoimmunity is –doctors, patients, and the public.
I think we need to develop a new medical field just to address the exploding number of people with autoimmunity.
I think that those of us with autoimmunity need to band together and not let the different symptoms of our common illness divide us.
I think we need to start saying “I have autoimmunity, specifically hashimoto’s“ (in my case) to bring awareness to and unity around a single disease.
It starts with me:
Hi, my name is Sarah, and I have autoimmunity.