iunderstandendometriosis

How to help loved ones, friends or health professionals understand what you are going through.

Print out information

If you are having a hard time explaining your symptoms or just Endometriosis itself, print information from this site and share it with family members and loved ones. Allow them to read and understand it for themselves. If you don't know how to use your voice and really convey this, use your voice with tools. After years of battling and my family seeing my journey, I still found it hard to explain to them what I was going through. I decided to print off material and highlight things that pertained to me. When my sister read the information I gave her she cried and said she finally understood. You deserve to be heard too.

Print out this pamphlet

This is designed for you to give to loved ones, friends or doctors. Once printed, you can then customize it to your symptoms, needs and story.

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Tips for endo-warriors when speaking to others.

Try not to get offended or hurt by what others say, however; use your voice when needed

Unfortunately others will compare your story to others or your symptoms to others or even their own. Whenever this happens try your best not to get offended or hurt. You will get this a lot of times from acquaintances and sometimes from people you care about. Although many will never understand the basic level of what you are going through, be it pain, fertility issues, symptoms and related issues, many try to show their support by relating to you in some form. Most do not mean any harm. However, if you are close with someone and what they say hurts you, it is ok to let them know. This bridges the gap of communication and helps you not feel alone or that your feelings do not matter. They will never know if what they are saying is hurtful unless you tell them. If you allow them to continue to say things that hurt you from time to time, you can hold onto an emotional baggage that may not be necessary.

If after you say something and the person continues to say things from time to time that hurts, then it may be necessary not to confide in this person. You will learn who you can go to as a support system.

Find an outlet if you are not able to talk to loved ones or friends

1. Counseling can be a good form of support as you work through your emotions.

2. Find and connect with a support group for endo warriors.

How to be a supportive loving family member or friend.

When other people's health journeys are compared to someone else's it doesn't feel good. Every person's journey, symptoms, emotional well being is different. What one may have experienced or gone through is different than another. Be there as a support system, this may come in different ways in different times.

Don't compare

When other people's health journeys are compared to someone else's it doesn't feel good. Every person's journey, symptoms, emotional well being is different. What one may have experienced or gone through is different than another's. Be there as a supporter, this may come in different ways at different times.

Don't compare or say "So and so has Endometriosis and did ... and is better now." This can make the person who is suffering feel like everything they have done yet so far has failed them and that they are a failure. You can, however; be encouraging about a treatment someone has went through or doing. A sufferer may take something better if said in a more positive way, "So and so went through a similar situation or had similar symptoms and tried... Maybe it's something we can look into." If the sufferer says, "I have tried that or I don't think so", do not take it personally. Many times the sufferer has tried many options that you aren't aware of.

Don't compare your personal story of pain/suffering or another person's story to theirs. You wouldn't tell someone that has a tooth ache, "Oh I know how you feel, or I know someone that knows how you feel, because I or they stubbed our toe." Yes, both show pain, but are completely unrelated. These are two different body parts, they last different durations of time, pain levels are different and have different lasting symptoms for example swelling. On top of that, tooth aches are all different in their own ways. Some people have them because something got stuck between the teeth, the tooth is loose, there is an abscess, wisdom tooth pain etc. The point is nothing fits all and bringing up something completely unrelated can be hurtful.

You can, however; suggest your loved one or friend to reach out to the person you know that has endometriosis for support or help with what they have gone through.

Be an encourager

Say things like:

Let's fight this together.

I'm here for you.

I can be a listening ear whenever you need it.

How can I be here to support you?

What can I do to help you in this moment?

Don't take things personal

Understand you can be the best support system and show love and care sincerely, but if your loved one or friend is emotionally/physically overwhelmed, they may still show signs of hopelessness, feeling overwhelmed, feeling alone etc. Many that go through this, go through many different emotions. Some may still feel alone even if people are present in their lives and are helping. the feeling of hopelessness in not getting better can be overwhelming. Do not take this personally. continue to be there as a support system as needed. Just know, it is a lot to go through something that you don't always have answers to. Frustration will be present at times on their end. Even if you feel your part is little, know it really is big. A lot of times the loved one or friend may not want to a burden and may not reveal when they are struggling physically or emotionally. It can be hard to feel so horrible physically and mentally and the thought of expressing this to another person just to worry about you can be overwhelming. The pressure of having to worry about someone else worrying about you can be a lot.

Medical professional's power to help or not help.

Never underestimate the power you have in being compassionate or not

Many times someone is coming to you for help because you are their last resort or they have tried other options. For example, if you work at a hospital in the ER department; this person may be here because they can't take the pain anymore or the symptoms along with it including uncontrollable vomiting. Just being there with a compassionate heart goes a long way to someone that has been suffering. Not being compassionate can make someone feel like, "What's the point in reaching out to the medical field to be made to feel like this is all my fault once again?" Show compassion and you will help take away some of the suffering in that moment.

If you work at a doctor's office and or if you are the doctor this person finds themselves attending next; compassion goes a long way. This person may have gone through waves of hopelessness over the years etc. Showing compassion that you want to hear their story and try your best to fit their needs; being as basic as office filing with a kind heart or being the doctor that shows you are interested in their case and will do your best to treat them, can mean the world to them. Many times, women have gone from doctor to doctor trying to find someone that will listen to them, understand medically what they are going through and not make them feel like they are crazy or that things are just in their head. The power of a medical professional is huge. Even if you are a skilled specialist, the pairing of knowledge of the disease along with compassion is priceless.

I Understand Endometriosis

My story, Your story