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.
- 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.
- "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.
- "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.
- "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!