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People with chronic pain often face more stigma than some people with visible disabilities because you can’t see pain so people assume that it’s easy to manage. Living with migraines can be hard because they often are misunderstood as a bad headache even by doctors but if you get migraines you know it’s so much more than that! Migraines are genetic and run in families but even though they do run in my family that is not why I get them and I have a condition called Hydrocephalus which makes me more prone to headaches or migraines than most people. I have not always experienced migraines but most of my life I hardly ever even experienced an occasional headache and it wasn’t until a few years ago that I started getting them on a regular basis to the point I need medication to treat it so I could basically function. It was weird too because it happened so suddenly and literally one day I started getting daily headaches that never stopped which makes me wonder if I did something in my previous life that triggered them! There is so much stigma around headaches and migraine disorders because people can’t see our pain and often assume it’s easy not there and easy to live with. There are so many things non-sufferers will never understand about my pain that I wish they could so in this post I am going to name a few.
Some days I can’t get out of bed- I can’t jump out of bed and be somewhere in twenty minutes like most people can because my pain is at it’s highest when I first wake up and it usually takes that time to get out of bed. Some days when pain is higher it can take up to two hours for me to have the strength to get out of because the pain is too much or my medication is making me extra fatigued. Doctors say that my meds shouldn’t make me fatigued during the day but it always does so jumping out of bed will never be an option! I truly wish I could quickly get out of bed but that never happen and the quickest I can get moving is ten minutes and that is only on a good day! My pain is at its worst in the morning because I have slept for several hours and have gotten no nutrition or drank any water which is what I need to prevent pain! Coffee and food help get my pain to a bearable level in the bearable but I need the strength to get up to make it which can take a while! I don’t always wake up with severe pain and some days I can wake myself up in a reasonable time frame but not every day will be like that. I never know when I will have a good day until the day of because my pain is unpredictable and gives me all kinds of unpleasant surprises!
I am more sensitive to noise– I have never enjoyed things like concerts because when you have Hydrocephalus you are more sensitive to loud noises so it’s not as fun for you. I am not going to say that everyone with Hydrocephalus hates loud noises because I know people who are not bothered by them but that has never been the case for me. I have always been bothered by the noise at concerts or even at loud restaurants but now I am even more sensitive so it’s even less enjoyable. I can’t even function in a lot of social settings because the noise it too much for me and sometimes a normal conversation can sound like your screaming at me and three times louder than it would sound for most people. My processing is slower when I am struggling with noise sensitivity and even a simple sentences can be a serious struggle to focus on or comprehend. It takes me twice as much effort to figure out what someone is saying when the noise around me is also bothering me! Listening to music sometimes helps when I am more sensitive to noise because I can block out extra sound that may be upsetting to me. I can’t even set alarms because the noise is too bothersome to me and would only trigger an attack so it would take me longer to get out of bed than it normally would. I only set them if I have a medical appointment and I absolutely have to.
It’s not just head pain– People often think that migraines are just head pain but it’s not and some people don’t even experience head pain as their first symtom. When I am about to have a migraine attack the first sign is not head pain and it’s usally, nausea, jaw pain and instense muscle pain. Once I am in a full blown attack I have head pain but everything leading up to that point is not head pain. I can’t even eat in the same way that I could before I had chronic pain because it could trigger my nausea or jaw pain which is never fun to deal with! My workouts are not the same because I can’t workout at the same intensity as I could before chronic pain and have to do workout at a much lower intensity level. There are no exercises I can do to improve my endurance much because I limited to what types of things I can do before it becomes triggering.
It affects your heart rate– I was glad when temperature checks were no longer required for medical appointments during Covid because as someone who experiences chronic pain it was stressful! When you live with chronic pain your heart rate and temperature will run higher than most people because that is how your body copes with high pain levels. Whenever I went to the doctor during Covid I had to take Tylenol beforehand to make sure my temperature was within the normal range because it’s normal for it to run in the high nineties and low one-hundreds on high pain days and when that happens people freak out. I am not sick and my body does this rather reguarly so it’s perfectly normal for me to have a higher temperature, heart rate and to even cough a little to cope with the pain. It’s hard to explain this to medical professionals because I am not crying about it so it doesn’t appear that I am in any pain!
Yes I have tried exercise- There is nothing migraine sufferers hate more than when people come up to them and say have you tried exercising more because maybe that’s the reason your in pain. Yes, I have tried exercising and do believe it can give you great benefits but it’s different when you have chronic pain. Exercise can help with the frequency of attacks but exercising or the lack is not the cause of a migraine disorder but doing too much can be triggering! There are some workouts I can’t do because it has triggered migraine attacks and I have had several instances where in the middle of my workout I have had to stop because of pain! I only do low-intensity Pilates routines with little or no equipment but sometimes that is all it takes! Encouraging people to exercise is one thing but to tell someone with migraine disorder to up their intensity to lessen their pain is bad advice because usually the opposite will happen!
It can affect my gut affect health– Poor gut health can affect you in more ways than you realize and one of the things I have noticed is it has a massive impact on my migraines. Sometimes when I have high pain levels it affects my gut health and it takes twice as long to have a bowel movement. Some days I can’t go to save my life and other days it may just take three times as long which is annoying to me because no one wants to spend half their day on the toilet! I started eating more vegetables and taking a probiotic which seems to help regulate it a little, but like anything else, it’s not foolproof and you still run the risk of something not working the way it should even if you have done everything you can for things to run smoothly because that is the advantage of living with pain!
I am in pain constantly– Many people don’t understand the meaning of chronic pain because I can’t tell you how many time people have asked me if I have pain today? Yes, I am always in pain because chronic pain means you are in pain constantly even if you are smiling and have a good attitude about it! Some days your pain may not be as intense as others and you can do more things but don’t be fooled pain is always present! I kind of get sick of explaining my pain to non-sufferers because people don’t understand or sometimes don’t want to and assume I am not in pain when I don’t talk about it. Everytime I try to explain it’s like talking to a brick wall because you will never be able to fully understand something you have never experienced.
There is a lot of stigma to living with chronic migraine or any type of invisible pain because people can’t see your pain so it’s very hard for them to imagine that it’s real or even that bad. People in pain get really good at hiding it because you have to in order to spare the feeling of others. You can judge someone based on how well they can present themselves because some people are very good at being happy and cheerful while being dead instead! Many chronic pain sufferers feel like they are alone and that the only people that believe that their pain is real is other people who have also experienced it. Believe them even if you have a hard time seeing someone’s pain because that is the best kind of support you can give someone. If you don’t even have basic knowledge of your friend’s chronic condition that should be your cue to research it and you shouldn’t wait until someone makes a post. It always makes me happy when I see other people taken the innovative to learn more about my disability so they can better help me before I even had the chance to say anything! Always remember that migraine is not just a headache but can affect your entire body and to say “it’s just a headache” is very dismissive of someone’ severe pain! Everyone migraneur has different expereinces and triggeres from each and no two people will be exactly the same. What do you wish people could understand about your migraine pain?
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Sue Jackson
What a wonderful, informative post! You are so right about people misunderstanding so much about migraines. My son gets them as a part of Lyme disease, and I get “menstrual migraines” due to hormonal shifts. I think the biggest misconception is – like you said – people thinking “it’s just a headache.” When my son gets a bad one, he has to wear sunglasses in the house and lie down in a dark, quiet room. Luckily, treating his Lyme has helped reduce them, and when he does still get one, he has a couple of meds that work pretty well (if he catches it early).
Great post – I will share widely in the hopes of educating others!
My Rockin Disabled Life
Thank you, I am glad you liked it and I appreciate you sharing my post. I have to do pretty much the same thing as your son during a bad attack and the only medicine is sitting in a dark room and hope I can sleep it off! Luckily I can tell when one is about to strike days before it actually happens so I can plan my day accordingly!