When you have endometriosis, sometimes you feel misunderstood within your own family because most family members do not have endometriosis and probably think it’s just a bad period. 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 that endometriosis only affects you a few days out of the month. Endometriosis can sometimes feel isolating because you wish people could understand what you are going through, but it’s clear they don’t. What do I wish my friends and family understood about endometriosis? 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 pain medication when I am not on my period because pain can flare any time of the month. Most woman feel crampy a few days out of the month but I started feeling crampy ten days before I get my period and it often lingers a few days after it’s done. I may not always look like I am pain but I promise you I am because the longer you live with pain the better you get at faking 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 to get good sleep, but my pain does seem to care about sleep because I wake up multiple time of night with some kind of severe pain. Pain keeps you up, and most days I sleep well under six hours, and sometimes as little as four. It doesn’t matter how early I go to bed, I still get the same amount of sleep as I would if I went to bed later. 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. If it looks like I haven’t slept in weeks and am completely exhausted, it probably means I am because endometriosis causes fatigue. Fatigue is a common symptom for many people with endometriosis but it’s not just feeling a little tired and it’s complete exhaustion that coffee can’t fix.
I often get random pain and have to stop what I am doing- When you have endometriosis, you can never anticipate when you’re going to have severe pain because it’s often unpredictable. I sometimes will be walking and out of nowhere will get stabbing pains and have to stop what I am doing. These pains usually happen a few days before I get my period so I have somewhat of an idea of when to expect it but they can happen any time of the month. If I am fine one minute and the next it looks like I am going to pass out on the floor I probably got some kind of severe pain that makes it painful to stand so I had to sit down to rest.
Skipping an event on my period is a valid excuse-. If I get my period on the day of an event, often I won’t go because my period pain is so debilitating and sometimes I struggle walking to 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 endometriosis pain can be so debilitating that it caused you to vomit or pass out. 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 sometimes helps lessen the cramps, but they still can be severe and prevent you from being able to live life.
Exercise often causes pain to flare– Exercise can help some people with endometriosis manage pain but it can be difficult to exercise because often it triggers more pain. I try my best to be consistent with exercise but sometimes I can’t be as consistent as I want to be because endometriosis pain affects my entire routine. I can’t push myself as hard as someone without endometriosis can because exercise often causes pain to flare. If you see me exercising less, most of the time it’s not because I am being lazy and don’t want to. It is because I always have to think about how my exercise is going to affect my pai levels. It can be difficult to see fitness progress with endometriosis because sometimes you have to take more rest days. You won’t necessarily have less pain by exercising more but sometimes you will have more pain.
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. Period cramps that prevent you from living life are not normal and if you doctor tell you that, then find a new doctor. Your level of pain is a very poor indicator of how severe your endometriosis is because you can have severe pain with mild endometriosis and no pain with advanced stages. There is so much to living with endometriosis that my family is never going to understand and that is okay because the best way you can support someone is to educate yourself. 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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