When you have endometriosis, sometimes you feel misunderstood within your own family because family members don’t have your disability and often believe things that they didn’t realize are hurting people living with the condition. Families want to be supportive of their loved ones struggling with endometriosis but sometimes people don’t know how to support us because it can be difficult to understand a disability you have never experienced. My family is supportive of my pain but sometimes it is frustrating explaining things to friends and family because sometimes people believe stigma and think it’s just a bad period. Endometriosis can sometimes feel isolating because you wish people could understand what you are going through, but it’s clear they don’t. In this post, I am going to talk about what I wish my friends and family could understand about endometriosis.
I am pain all the time- Endometriosis is often misunderstood as bad period cramps and sometimes people think that we only experience pain when we our on our period and feel fine the rest of the month, which is so far from true. People with endometriosis have higher pain on their period but that doesn’t mean we are pain free the rest of the month, and a lot of us have pain all the time. If there is one thing that I want my family to know it’s that my pain is at it’s worst on my period, but I experience symptoms 24/7 because endometriosis is a full-body disease, not a period disease, and affects you all the time. I sometimes have to take painkillers when I am not on my period because pain can flare any time of the month. I may not always look like I am in pain but looks can be deceiving because it’s not hard to fake being well.
If I look tired I probably am– Sleep can be very difficult for people with endometriosis and it is not uncommon for someone with endometriosis to struggle with insomnia because of pain. I try and get good sleep, but almost every night I am awakened by some kind of severe pain, which is usually painful bladder that is far worse than what I’d normally experience and am not able to get good quality sleep or fall back asleep as easily as I could before pain. Pain keeps you up, and most days I sleep well under six hours, and sometimes as little as four, and as much as I try to improve myself it’s difficult to improve my sleep. It’s not from lack of trying because trust me I hate always being tired and sometimes I just can’t fall asleep due to pain and I can’t change that. If it looks like I haven’t slept in weeks and am completely exhausted, it probably means I am and could use a large caffeinated beverage. Fatigue is a common symptom for many people but it’s not just feeling a little tired and it’s complete exhaustion that someone without endometriosis will never understand.
I exercise out of fear- It is often believed that if you live with pain that exercise is completely out of the question, but that is only true for some people. Exercise can be difficult for some people with endometriosis, and depending on the severity of your pain, you may not be able to exercise because sometimes standing can be very painful. I exercise on a regular basis and sometimes people may think that I have low pain because I am exercising but even though you don’t see it, my pain affects my entire workout routine. You see me exercising, but what you don’t see is that the reason I am exercising is because I get constipated more easily and am fearful that I will make it worse if I don’t move my body. Bowel movements often are very painful with endometriosis, and it doesn’t matter how much you increase your laxative intake, you still sometimes struggle. I exercise not because I want to but because I am fearful of making my constipation worse and feel like I have to. Pain makes me not want to exercise but a lot of the time I do because it’s more difficult to go to the bathroom, and movement helps prevent constipation. Endometriosis does not only affect your menstrual cycle, and bowel issues are common with endometriosis.
Skipping an event on my period is a valid excuse- If I have an event coming and am expecting to get my period, I get a little anxious and sometimes I will force myself to go to that event so I am not judged. If I get my period on the day of an event, sometimes I will not attend that event unless it’s important, but it’s not because I didn’t want to be there and trust me, I probably did. I will not leave my home on my period because my pain is often so debilitating that I can’t walk farther than my bathroom. Most women on their period can pop a few Advil and continue to live life, but when you have endometriosis, a few over-the-counter pain medications often do not work, and the pain prevents you from being able to live life. Skipping an event on your period when you have endometriosis is a valid excuse because most people can barely function. I am grateful that my family has never given me grief for skipping an event when I get my period because that is my worst fear but there is still part of me that feels a little bad. Pain medication does help lessen the cramps, but they still can be severe and prevent you from being able to live life.
Endometriosis causes inflammation throughout your entire body and is more than bad period cramps. Some people with endometriosis do not experience pain, but a lot of people do have severe pain that significantly affects your quality of life. Endometriosis is a common disease that is often misunderstood and misdiagnosed in the medical community, that needs more awareness because it should not take up to a decade to get a diagnosis. Period cramps that prevent you from living life are not normal and if your doctor tries to tell you that, find a new doctor. Your level of pain is a very poor indicator of how severe your endo is because you can have severe pain with mild endometriosis and no pain with advanced stages. I will never expect my family not affected by endometriosis to fully understand it, but I do hope people unlearn stigma so they can better support their loved ones affected by the condition. What do you wish family and friends understood about endometriosis? If you liked this post, please leave a comment below and share it with your friends.
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