Tuesday, March 13, 2012

How to Explain Endometriosis--Made Easy

So every once in a while I find myself in a situation where the best course of action is for me to explain endometriosis to someone. Sometimes this is simply an attempt at raising awareness; several months ago I abandoned my desire for privacy in favor of educating others about what endometriosis was. Although I occasionally still get embarrassed talking about the dysfunctions of my body, it makes me feel good to spread the word. The problem is, there are different situations and different people that call for explaining my disease. Differences in closeness, working level, gender, and appropriateness can complicate things. And there is no one-fits-all explanation.

Here is my attempt to give a list of general-format-explanations. I am sure I will be adding more, I am sure I will get many critiques. And bear in mind that each of these will need adjustment for individual/varied situations. They are really only meant to be one possible 'practice script'--a guideline and nothing more! But please, take a look, and hopefully you can pull out something of value. I want to help other women get of those 'tight fix don't know what to say' moments. Maybe these will help.


  1. The Casual Friend: sometimes, when you are just trying to get to know someone, situations come up that require you to either explain what's happening or look like a dramatic nutter (alright, these are two extremes, but I have found myself in both situations). Unfortunately, when you're just getting to know someone, it is generally not enjoyable to describe the problems of your womanly body in excruciating detail. And, more often than not, you come up against the barrier that this individual knows nothing about anatomy. So here is my basic explanation: 
    • "I have an illness, called endometriosis. You know how normal women have cycles (periods)? Well, that kind of tissue spreads throughout my body, and grows where it shouldn't. It causes a lot of swelling and pain--it sometimes even 'glues' my organs together. The pain and complications makes normal 'woman issues' at least ten fold for me. So if I cancel plans, seem cranky, or just off, please know that I'm trying." 
    • I like this explanation because it does not require a degree in anatomy and tells enough without going into too much detail. It sells a person enough to show trust and value in their friendship, without burdening them with personal issues or divulging more than you're willing to share.  
  2. The Boss: Everyone with endometriosis knows that it can interfere with your work life. You have two options--get a doctors note and let your boss/coworkers mind their own business, or tell them everything (not a lot of in-between when your illness affects others in the work place). In all honesty, they have no right/justification in knowing. Every employee has a right to keep their medical history private. I choose to share mine (in the appropriate situations) because it make it easier for me to explain my missing work due to illness, particularly when it is a cyclical absence. I don't feel threatened by sharing it and I have worked in environments where sharing my endometriosis knowledge with others is helpful. Here's what I generally say: 
    • "I'm not sure if you know what endometriosis is, but it's an illness I have. Due to endometriosis, I have problems with migrating tissue, tumors, cysts, and extreme pain. I work very hard to keep this from interfering with my life. But sometimes, I have no choice. When I have flares, I have two options--I can either come into work on prescribed pain medications from my doctor, or I can stay in bed. If the pain is minor enough, I can take safe enough medications to have it not interfere with work. If the pain is severe though, it would be best that I do not come in. The disease is worse for some than others, so if you need a doctor's note confirming that I have a disruptive case, please let me know. I hope you will be understanding and cooperative in helping me continue work despite this illness." 
    • I like this explanation because it is professional. It focuses minimally on the personal implications and mechanisms of the disease, and primarily focuses on the possible interference it has on work. I think it helps maintain some privacy as well. But remember this--you are never obligated to disclose your personal medical history to your boss or coworkers. You can get a note from a doctor and talk to them about how to maintain privacy without requiring a doctor's visit note every flare. 
  3. Dating: When starting a new relationship and you are getting know that person, it will probably, at some point in that relationship, come up that you have endometriosis. I'm not proposing sitting down on the first date and pulling out your medical chart. But I do suggest that if the relationship starts becoming more serious, it probably something you should share. Aside from the possibility of infertility (a difficult subject at best), your potential loved one should know that there will be certain times where you will be struggling. A steady relationship implies trust and a mutual ability to count on one another--it seems fair to give that person a chance to be there for you. And, if you choose to begin a sexual relationship, they should know that you will sometimes be unable to perform certain acts of intamcy, 
    • "I'm not sure if you have noticed, but sometimes I don't feel very well. I have an illness called endometriosis. About 1 in 10 women have it, but some have worse symptoms than others. It messes with my reproductive organs. That tissue called uterine lining, what most women shed on their cycle, mine spreads through my body. It grows in little colonies and causes inflammation. The growths can create scar tissue, bind organs together, and when it sheds inside me it has nowhere to go, and it can be really painful. And that pain can make me a little irritable. There are some complications with the disease that can affect intimacy and maybe even fertility. But I am telling you this because I care for you and want to make this work. I hope we can be open and honest about these complications and work past them.". 
    • So, obviously, this explanation will be the most personal and is never directly mappable onto anyone's personal experience. It gives a suggested outline of points to cover. Primarily, it explains how the illness affects you personally and how it may affect the relationship. It also explains that you want to work with that person to overcome those complications. That way you can let your boyfriend/girlfriend know that your issues exist; it puts them on the table, and makes them aware. My advice is, no matter what stage of the relationship you introduce this information at, be sure it is appropriate for that stage, the person, and that you are willing to talk about it (and make it clear to your partner that they can ask questions). Also, you do not have to make talking about infertility the same talk as 'will we ever have babies'. Those are two heavy subjects, and the second will likely come later in the relationship than the talk about endometriosis. If your partner has concerns though, there is nothing wrong with talking about them. 
  4. Family Members: I personally think this can be the hardest group to explain this disease too. These are often people who have known you most of your life--they've seen you go through many life experiences, ups and downs, and they often assume they know you well enough to understand what you are going through at any time. Unfortunately, this makes them a particularly difficult party to explain endometriosis too. Simply because, not only is it hard for them to envision something really awful happening to someone they love, but people often have a preconceived notion of already understanding their family members completely. Teaching them something new about yourself can be difficult--they already have a well established map of you in their heads (and this is true for me as much as anyone else). So here's my attempt, 
    • "I want you to try and understand what Endometriosis is. Please look up some information on it when you have some time. Instead of having a normal period, my uterine lining is migrating through my body. It is shedding inflammatory chemicals (i.e., chemical pain), creating painful scar tissue, and can even glue my organs together, so they stick and 'tug' on my insides. It can also make me extremely moody and even depressed. I don't like how it affects me or my relationships with people. I haven't always been sick, but I am now. I have to try a lot of difficult treatments and surgeries to feel better. It is a spectrum disease, and some women might have mild endometriosis, but that is not the case for me. My life has been seriously impacted and changed by this disease. I know it's hard to imagine a family member in so much pain, but I promise it's the truth. It would really make me feel better if everyone could understand that I feel very ill and that I am not faking or exaggerating. Because it would really help to feel your support and to feel like you are on my team.". 
    • This explanation not only points out the basic symptoms of endometriosis (in a little more familiarity and detail), but it also references how it may affect your interpersonal relationships, without placing blame on the listening party. It's never good to accuse or label others--it makes them defensive and feel disrespected. By keeping the explanation focused on yourself and your struggles with the disease, it frees them up to listen in a respectful manner and gives them a chance to be understanding. In relation to this, it is important that you give them an opportunity to be supportive, even if they have not in the past. If you are attempting to reach out to them and recognize something different about you, you owe them the same courtesy. Try to be calm and patient and hope for the best. And if they choose to disregard your attempt to include them, try your best to stay focused and remind yourself that you cannot control others. 

I hope there is a viable and helpful pattern in all these explanations. They give a basic and non-medical explanation of what endometriosis is and helps identify the prospective affects the disease will have on said relationships. It's very basic, so please don't interpret this as an 'end-all guide'. But hopefully it will help. If anyone has personal suggestions/stories/hints to add, I would love to hear them. Thank you for reading!

8 comments:

  1. thank you so much for sharing this! I'd love to be able to share it on my blog with a button to your blog.. would that be okay?

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    1. Of course! Thank you, I hope it helps!

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  2. Thank you, found this very helpful!

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    1. Thank you very much, that makes me so happy!

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  3. Replies
    1. Thank you, I hope things improve for you! xx

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  4. It breaks my heart that I came across this post because I googled 'how to explain endometriosis pain to male colleagues' ( after sitting at my desk writhing secretly in pain surrounded by young male colleagues all week and deciding to bring a hot water bottle with me today) but I'm glad I did because I feel like my frustration is varified and shared. Thanks for a really helpful and empathetic post.
    I really just want to explain my hot water bottle without the typical 'period pain' eyerolls (don't even get me started!!) without going into the gory chocolate cyst details, but after reading your post those immature guys can just ponder to their hearts content! Thank you!

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    1. Thank you for your sincerity and compliments. I have been there and it is beyond frustrating to feel trapped by lack of understanding. I am glad that, years later, this article receives the most visits and appears to be the most helpful. I hope you find relief and peace in your struggle xx

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About The BedRiddenHead

I want to be happy. And this site is about that chance. How to strive to thrive in the body I've got and maybe turn my experiences into something worthwhile.

This site aims to help educate and reach out to people all over that struggle with pain or illness. To try and make something helpful. I work as a medical research writer, my background is in neuropsychology and biology, and I want to share what I learn in a way that is easy to understand. I am not a doctor. I'm definitely not your doctor. I am just some lady who wants to make someone's (anyone's) life a little bit better. Whether you have endometriosis, a chronic injury, a struggling friend, or just want to learn something new, I hope to make a place that has what you are looking for.

Thank you for stopping by, I wish you strength in your health and happiness.