When you live with a painful condition such as endometriosis, people often think that the worst part is the pain itself. Living with pain is physically and mentally exhausting, but sometimes the pain itself is not the hardest part, and it is the struggles that are not talked about enough that you may not be able to see easily. Most people without endometriosis often know that it causes a lot of pain because that is common knowledge, but are completely unaware of all the other emotions that living with a painful condition can cause, because it is often invisible. Living with crippling chronic pain that you can never get relief from is hard, but that is only the part of it that people see, and sometimes the pain itself is not the hardest part, and it’s the daily struggles. What is the hardest part of living with endometriosis? In this post, I am sharing a few of the most difficult things about living with endometriosis that are harder than the pain itself.
Learning how to function with crippling fatigue- If you know someone with endometriosis, you may see them struggling with pain because, sometimes, severe pain affects your mobility, and it is visible. Endometriosis doesn’t just cause a lot of pain, but what a lot of people don’t know is that it also can cause crippling fatigue that can be worse than the pain itself. When you live with chronic pain, your body has to work a lot harder just to function because pain causes inflammation throughout your entire body, which completely drains your energy. It is not the kind of fatigue that can be alleviated by taking a nap, and often napping doesn’t make you feel better. I am always tired because severe pain often causes insomnia, and navigating fatigue is one of the hardest parts of living with endometriosis. I almost never feel well-rested because I rarely sleep through the night, and even when I do, I still feel fatigued. Ninety percent of the time, every single bone in my body feels completely drained, and I don’t want to do anything. I want to do so much, but live in a body that has no energy and wants to sit on the couch all day and do nothing.
Explaining to family members that it’s not just a bad period- Family members often are very supportive of their loved ones in pain and want to do everything they can to help make their lives easier. People without endometriosis often do not understand or realize how serious this condition can be, and will think that they can relate because they get period cramps too. One of the hardest things about living with endometriosis is getting support and explaining to family members that it’s not just a bad period and affects you all the time.
It’s dealing with unpredictable flares- People often think that the only time you experience severe chronic pain is when you are on your period, and I only wish that that were true. I am always in pain, but I don’t always have severe pain, and some days my pain is barely noticeable. Chronic pain is often unpredictable, and one of the hardest things is navigating unpredictable flares. I expect to have severe pain when I am on my period, but despite popular belief, it’s not the only time my chronic pain flares, and I wish it were more predictable so I could plan my life around it.
Finding a doctor who takes your pain seriously- When you live with chronic pain sometimes people think that the hardest part about it is the pain itself. Chronic pain changes your life, and it is hard, but the hardest part is navigating the healthcare system. Endometriosis takes about seven to ten years to get diagnosed and women often are dismissed by several doctors before they get a official diagnosis. When you do get a diagnosis, it can take even longer to get treatment because general gynecologists are not endometriosis experts and not all endometriosis surgeries are covered by insurance. It can be difficult to find a doctor who understand that endometriosis is not just a bad period and pain medication or birth control do not actually treat it.
Accepting the reality, life is never going to be the same- People without chronic pain often do not realize how much it impacts and changes their lives. I have always struggled to do basic tasks because of my physical disability, but because of pain, I am even more limited. Chronic pain has changed the way I do everything, and there are some activities I can no longer do without increased pain. Accepting the reality that my life is never going to be the same is one of the hardest parts of living with endometriosis, and sometimes I grieve the life I had before pain.
Improving your fitness while being in pain– Exercise is hard for anyone, but it’s even harder when you live with chronic pain. I am able to exercise regularly, but it is more difficult for me to improve my fitness, and it’s not because of my physical disability and it’s my chronic pain. Chronic pain makes it more difficult to improve your fitness because most times, I don’t have the energy to push myself as hard as someone without chronic pain. It is hard to improve your fitness when you are always in pain because chronic pain does affect your workout performance.
Endometriosis is a very challenging condition to manage because not everyone gets relief from the same types of remedies. It is hard to live with severe pain, but the pain itself is not the hardest part, and it’s dealing with all the emotions that come with it. Depression is common amongst people with painful conditions such as endometriosis, because it affects your quality of life, but often we are expected to do things at the same capacity as someone without chronic pain. It is hard to live with chronic pain because most people don’t understand how it affects your life, and you are constantly having to advocate for yourself. If you live with endometriosis and are struggling with pain that you cannot see, remember that you are not alone and don’t have to prove your pain to anyone. Pain is still valid even if people don’t believe it’s real or if someone else has worse pain than you. What do you think is the hardest part of living with endometriosis? If you liked this post, please leave a comment below and share it with your friends.
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