Supporting Someone with Endometriosis

Supporting Someone with Endometriosis

Spoons And Sunflowers – a Column by Kimberli Davino

Being a spouse, family member, or friend to someone with endometriosis can be challenging, especially if you do not fully understand the illness. Not knowing what to say or how to act can make it seem as though you do not care. It is important for those close to someone suffering to have a clear understanding of what endometriosis is. This can include understanding symptoms, treatments, and even side effects from medicines. Letting endometriosis sufferers know you are supportive can help tremendously with their coping.

In last week’s column, I discussed many things to never say to someone with endometriosis. This week, I will dive into a few tips on how you can be supportive.

Research 

Endometriosis is a difficult illness to understand, and the medical field’s lack of proper training and knowledge on the subject makes it even harder for anyone else to understand. For a while, even Google’s top-ranking definition was far off from what the disease truly is.

Within the last year, there has been a rise in awareness on the topic, and there are now many great websites and blogs out there. You can help by educating yourself and reading all about endometriosis. Equipping yourself with as much knowledge on the subject as possible could mean the world to someone suffering. You show support and concern when you approach someone to share something you have read about the condition.

Tip: It is not that we do not like explaining what endometriosis is. Many of us do, and that is why many raise awareness and post it all over our social media. But don’t come to us with false information on the topic. Here are a few great websites with accurate info:

Understand endometriosis varies

Endometriosis fluctuates. Pain and symptoms tend to happen spontaneously. No two days will ever be the same. It is important to understand that just because a low pain day or a good day happened, that does not mean the next day will be the same. It is frustrating, we know. But it is also just as frustrating for us not to know when our body is going to shut down.

Tip: Try not to become frustrated when someone with endometriosis did something big the day before, but is bedridden the next day. Understand that endometriosis causes the body to do all sorts of weird things at any given time. Enjoy the good days and be understanding and supportive on the bad days.

Understand there is no cure

Endometriosis is complicated: There are many theories, but the disease’s exact cause is unknown. If there is no certainty of a cause, how can there be certainty of a cure? Surgery is a method for endometriosis diagnosis, but it is not a cure. Some women need numerous surgeries while some find other noninvasive ways to cope with this painful illness. Many people suggest becoming pregnant or receiving a hysterectomy. While these two may subside pain and work for a few women, neither are cures.

Tip: Understand that endometriosis is a long-term illness. A woman who receives multiple surgeries will still have endometriosis. Endometriosis can grow back at any time — more intense and more painful — month or years after surgery. Accepting that endometriosis may always be there and becoming a support team for your loved one is the best thing to do to help your loved one through this journey.

Reach out to endometriosis sufferers

Many women suffering from endometriosis isolate themselves or become distant. It is not because they do not love you or want you in their lives. Rather, they may be embarrassed or in pain. Sometimes, having an illness can make you feel like a burden, which also makes the sufferer isolate themselves from those in their lives.

Tip: If you do not hear from someone, reach out to them. They may want to hear from you more than you think. Let them know they are not a burden and you are there for them. Come up with different ideas of what you can still do together or help find replacements for things they may not be able to do anymore.

Understand they are not lazy

Endometriosis comes with many other obstacles. Like chronic fatigue. Some women are not able to work, find themselves in bed all day, or complain about the pain they are in. This is not for attention or because they are lazy. Understand their body is truly going through a lot and they need rest.

Follow my journey on social media at @lifewithkimberli or on my blog.

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.

One comment

  1. Shelby says:

    This seems like an easy thing to explain to family and friends. However, some of my close family members have mental disorders that keep them from really truly 100% supporting and understanding me through this ordeal. I got stage 3 endo removed a year ago and am beginning to go through it all over again, and this time with more difficulty: painful intercourse, painful bowel movements, chronic fatigue, nausea at times, pelvic and ovarian pain as well as lower back… and it is returning at a time when I am planning to be having a breast reduction surgery and have just learned that I need all of my top teeth removed and replaced with dentures. I am only 25 years old… I sometimes don’t know how to handle all of this. I am in counselling, on anxiety meds [which were started on the baby dose, upped one dosage until I started having insomnia and strange dreams and then brought back down to the minimum], and have a wonderfully, supportive boyfriend. It is just with my family, financial and health issues combined sometimes — I feel like I am carrying 100 tons on my back.

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