My Sister Is Fighting An Invisible Monster

The topic I’d like to share with The Unchargeables community is another one that hits close to home for me: Cluster Headaches. Almost 8 years ago, my sister Stephanie, now 30 years old, was diagnosed with chronic migraines, as well as chronic cluster headaches.

For those who are not aware, clusters fall into two categories. Episodic Cluster Headache attacks occur in cycles lasting seven days to one year separated by pain-free periods lasting one month or longer. Chronic Cluster Headache attacks occur for more than one year without remission or with remissions lasting less than one month. You can check out the site Cluster Busters for further information.

A Life Turned Upside Down

Trying to deal with cluster headaches as a child.From the time my sister was 11 years old, she has had several different types of headaches. But this condition has turned her entire life upside down. While there has been some success with medications and oxygen therapy, it turned out not as successful for her. From the time she was little, she has been immune to pain medications; even simple antibiotics take longer to work on her. For the last several years since her diagnosis, Steph has really struggled to get answers. And of course, because cluster headaches are an invisible illness, it is harder for her to be taken seriously about how much pain she truly is in.

You can imagine my frustration being her big sister. I am supposed to able to protect her. And I can’t protect her from this. Instead, I am watching as an invisible monster attacks my sister six times a day relentlessly and without mercy. And people to say things to her like, “Maybe you should see someone.” Or, “Well, you look fine.” What the medical field and the general public don’t seem to understand is that not everything can be easily diagnosed with a simple textbook or basic chart.

We Don’t Know Enough About Cluster Headaches

What has truly shocked me since Stephanie was diagnosed is how many times we have heard, “We just don’t know enough about cluster headaches to know the true cause of them.” I am sorry, but when you’re in the medical field, don’t you often hear how doctors, scientists, and researchers love to discover the next big breakthrough? Why can’t the next big breakthrough be one on cluster headaches? While there have been some great studies done and trials on new medical procedures and medications, there needs to be more of an effort from the medical field and yes, even the media, to take this neurological disorder more seriously.

“The Most Painful Condition Known to Man”

There is a reason this condition is dubbed “the most painful condition known to man.” Individuals with this condition go to great lengths to relieve the agony they’re going through. It is for this reason that I find it highly insulting when someone simply dismisses this condition as “just a headache.” Don’t you think if it were as simple as taking a couple of Motrin, my sister would gladly do it? I also strongly believe that because invisible conditions are not necessarily known to be quick fixes among those in the medical field, it is easier to play the stress card than to find the answer.

Jessica writes about her sister’s struggle with cluster headaches.I also feel that the word “headache” should be removed indefinitely from the description of the condition. It may seem insignificant to do so. But I believe if we do that, it could get a wider spotlight put upon cluster headaches, thus, bringing it to the attention of the medical field and the general public. This could then lead to the start of a very long-awaited conversation on this neurological disease that has affected far too many people.

Just because this condition is considered invisible does not mean it is not real. I guarantee you, it is a very real condition to those who have cluster headaches and their loved ones.

About the Author Jessica Niziolek:

Jessica Niziolek writes about cluster headaches for The Unchargeables.Blogger, disability activist, writer, poet, and podcast host.

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