Assumptions and Misconceptions: An Open Letter to the World

As my pain continues to progress again, I find myself becoming more frustrated with the world. There are days when I want to tell my employer, “my adenomyosis is acting up, I cannot come into work.” Or days when I have to make excuses for my adenomyosis pain to avoid plans with friends and family members. It days like these when I wish the world was better educated on chronic illnesses that aren’t in the news daily. As a result, this post represents the things I wish the world knew about me and my chronic illness.

 

Top Four Most Heard Misconceptions/Assumptions About Adenomyosis (and Endometriosis): 

4. Endometriosis is treatable, just as the commercial says. All one has to do is, “talk to her doctor.” 

When Endometriosis is in the media, it typically appears in the form of the same line of commercials. Sometimes these commercials also use female celebrities to depict the truth and severity of the disease. These commercials make it sound easy to diagnose Endometriosis and help treat it. All you have to do is talk to your doctor…right?

In my experience, Endometriosis is not that simple. I understand that some women may be able to be treated and diagnosed as such. It’s great that doctors and researchers are making improvements for Endometriosis patients. However, based on my experience, I find that the world misunderstands these commercials. These commercials misinform those who are uneducated about the illness. As a result, I am often faced with the discussions based on these commercials and celebrities rather than the true severity of my illness.

Not only do these commercials not support the entire #endowarrior community, but they are also frustrating to hear. When I hear and see these commercials, I am reminded that there is no great solution for my issues. Now granted, I understand I have an additional obstacle with Adenomyosis. However, there is still no cure for either situation. For almost 10 years I have seen and talked to countless doctors. I have also tried a ton of different birth controls. Even surgery could not solve all of issues. I also know that I am not alone is this situation. A large population of the #endowarrior community cannot solve their issues with one simple pill. So as much as I would love to solve my issues in one simple appointment, it is not realistic.

3. To classify as a chronic disease, an illness must be terminal or life-threatening.

Surprisingly, I have heard this statement far too often from uneducated acquaintances. Typically, when we hear the term “chronic illness,” the first diseases that come to mind are cancers, AIDS, diabetes, etc. These are diseases that are shown throughout the media, as they unfortunately are very common in our societies. Yet, what society tends to forget is that diseases such as endometriosis and adenomyosis are also chronic illnesses. Although these diseases may not be terminal or life-threatening, they do affect the quality of life.

2. Heavy menstrual cycles are the same experiences as Endometriosis and Adenomyosis. 

I understand that many women want to provide sympathy and support, but in actuality, I become frustrated when others attempt to compare their pain to mine. More times than not, I hear from friends and family that they understand how I’m feeling. These women tell me that they have an idea of how I feel, as they’ve experienced heavy periods in the past. The truth is, these women may mean well, but they will never understand what I go through on a monthly basis. These women most likely experience heavy periods that reach the same level as my light ones.

Yet, we all experience these symptoms in different ways, as no two situations are the same. I find myself often on the other side of the spectrum, as I cannot relate to their situations either. I try to provide empathy to others, because if anyone know what a “bad period” is, it’s me. Nevertheless, I have realized that I cannot relate to a period that is considered heavy without the same extreme symptoms that mine have. This situation reminds me that we all need to attempt to support one another, regardless of the level of symptoms. I know, this can be easier said than done. But without the support of one another, we will never find a way to overcome our symptoms.

1. Endometriosis/Adenomyosis is an excuse for being anti-social. 

With these conditions, I am never fully able to predict when my symptoms will appear. However, when they do appear, I am unable to leave my bed, let alone the house. As a result, there are several weeks within each month that I manage to go straight to work and come right home. In this time-frame, I do not have the mere energy to be social. It is the moments when I want to curl up in bed and stay there, that I become anti-social. Yet, this may seem like a choice, but it is not.

When friends ask me to meet up for drinks or movies after work, a part of me always wants to say yes. I would love nothing more to relax and be pain free. Yet, there is a larger part of me that knows alcohol will increase the severity of my symptoms. Additionally, I also realize that I simply do not have the energy. Now, this is not the same thing as depression. I want to stress that concept here. Unfortunately, these illnesses drain my energy several times within the same month. But it is those moments when I do overcome these symptoms that the real victory occurs. Although others may not realize it, when I am social, when I do meet up while suffering internally, those are all large victories to me.

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So what do you think? Have you ever heard those misconceptions or assumptions before? Have you experienced others? Let us know your thoughts in the comments below.