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To the People Who Think My Chemo Isn’t ‘Real’

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When you hear the word “chemotherapy,” what immediately comes to mind?

Cancer. Bald. Nausea. Vomiting. Infusions. Sterility. 

Upon hearing that word, most people jump to the same conclusions with the same general consensus on how chemo works, who receives it and what side effects it has on the body. The truth is, chemotherapy isn’t just for cancer, and it affects each patient differently depending on how it is used.

Chemotherapy administration

Chemotherapy is used to treat many different disorders including but not limited to cancer and autoimmune diseases. Similarly it can be administered in different forms: intravenously, topically or given by pill.

Each chemotherapy can affect patients individually, such as causing hair loss, sterility and nausea, depending on the type of chemo and the dose given.

There has been stir in the media about a young singer named Selena Gomez having an autoimmune disease called lupus. Selena stated in a recent article that she’s “been through chemotherapy.” This statement was met with backlash from every corner of the Internet with comments such as “Chemo is only for cancer” and “You can’t be on chemo if you still have hair.” Reading these comments, I was baffled by what little knowledge the general public had on the effects and uses of chemotherapy.

As an autoimmune disease patient myself suffering from systemic sclerosis (scleroderma), lupus and vasculitis, I have undergone both low- and high-dose chemotherapy. I received injectable low-dose chemotherapy for two years and a pill form for another year after that. At the low dosing I had significant hair thinning, (including my head, eyelashes and eyebrows), nausea and fatigue a few days following the injection, and damage to my fertility. Most people around me had no idea I was getting weekly chemotherapy, but I was. No matter how low the dosing, the type of medication, and what it does for the body doesn’t change, simply the side effects are lessened. Chemotherapy is chemotherapy no matter how you receive it, or how much.

Since I now have serious organ involvement with a fatal prognosis, I was moved to high-dose intravenous chemotherapy. I have lost my hair, become sterile and spent long nights puking off the side of my bed in the attempt to abolish my malfunction immune cells. I must follow this regimen every 28 days for the next year, then be switched back to the low-dose chemo for the rest of my life. Chemotherapy never ends for autoimmune patients like me. It is the only option to prolong the life expectancy of our bodies while they are constantly at war with themselves.

A black and white photo of Chanel

No, I do not have cancer, but I am going through chemotherapy. 

For some reason, the general population cannot seem to comprehend this. They believe chemo is somehow not “real chemo” if it isn’t attached to a cancer diagnosis. This is absolutely inaccurate. Our IV bags are brought into the room in the same large Hazardous Material Bag, labeled with the same large block letters that read “CHEMOTHERAPY” in all caps, by a nurse who must wear protective gloves when hanging the drug — just as a cancer patient experiences.

Please do not demean patients going through such an aggressive and life-altering treatment if you truly have no knowledge of their situation. The disease you are receiving the treatment for makes no difference to the actually drug, and it certainly doesn’t make chemotherapy any less “real” — just ask any patient receiving it. Yes, at the lower doses you will receive less harsh side effects, but that doesn’t mean you aren’t receiving chemo.

Every patient receiving chemotherapy has a heavy load on their shoulders, whether it be for cancer, lupus, scleroderma, multiple sclerosis or any other illness. We are all warriors just trying to win back our bodies.

Follow this journey on A Day in the Life of the Tube-Fed Wife.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Originally published: December 1, 2015
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