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It is National Migraine And Headache Awareness Month! Migraine disease is the third most common and disabling disease in the entire world and affects one billion people world-wide but is often misunderstood as a bad headache even by doctors. If you experience chronic migraine you know that migraine pain is debilitating and takes so much out of your social life and isn’t something that you can always fake but a lot of people think you can. Families try to be supportive in the best way that they can and for the most part they are but sometimes family members make it so darn obvious that you don’t understand. I don’t expect my family to be experts on pain you have never experienced and will not make them feel stupid for asking questions that I have told them the answer to several times or is kind of obvious because I wouldn’t want someone doing that to me but sometimes it is frustrating to have to say the same things over and over again and still feel like people don’t get it. There is so much about chronic migraine that my family tries to understand but when I am in the middle of an attack and you start calling it a headache you make it very clear to me that you don’t understand because it’s more than just a headache! In this post, I am going to talk about things I wish my family understood about my pain that people try to understand but clearly do not.
My diet is hugely affected– Food is medicine because your nutrition can either help decrease the number of attacks you have or make them worse. People always assume that I avoid certain foods because of my stoma and that is somewhat true but I mostly work my diet around my pain. I am always aware that foods high in sugar will set off my stoma and won’t go bingeing on sugar because it is annoying to have to deal with constant stoma problems that I probably could have avoided but ninety percent of the time I am not thinking about my stoma and is the least of my concern. My stoma is frustrating because sometimes I just want to eat a donut without running to the bathroom for an hour but it doesn’t cause me pain like a migraine attack does. I sometimes eat a little healthier than most people would be willing to do and it’s not because I am scared of my body changing but there are a lot of foods I am triggered by . It can be difficult to find something I am not because there are more foods that trigger me than ones that don’t. My diet is majorly influenced by my pain levels because on days when it’s higher I tend to feel more nauseous and everything tastes nasty to me but on lower pain days it feels normal.
Head pain is not always the first symptom- People always associate migraine with head pain being the first symptom and for some people it is but head pain is not the first sign for everyone. When I start to feel a migraine coming I get extremely sensitive to light and start to feel slightly nauseous. On my sister’s birthday I tried a hummus that everyone was raving about so I decided to give it a try but because it was a high pain day it tasted very different to me. When I tried it tasted like straight vomit and I didn’t understand how people could like something that was so nasty but when I tried it a few days later it wasn’t my favorite thing but it wasn’t the worst thing I have ever eaten. It’s not something I would seek out but I didn’t hate it as much as I did the first day. Food tastes different to me when I am struggling with pain and sometimes I can’t stomach things that I would normally love because my appetite isn’t there. When I am in a full-blown migraine attack I do have head pain but it’s not the first symptom and usually, my first symptoms are light sensitivity and loss of appetite that is later followed by head pain after I am in a full-blown attack.
When my body needs to rest I am not trying to be anti-social- I hate parties with a passion not because I hate my family and don’t want to hang out with them but after big family gatherings, I always struggle with pain that takes at least two days to recover from. My theory for why struggle so much is after big family events is that I don’t do well with anything style which is every family event and lots of noise for long periods of time. When I am at a family gathering you will not know if I am having a high pain day or not because I will not make an announcement to spare the feelings of others but even though I am good at fooling people that doesn’t mean it’s a good day. I have gone to many family gatherings when I was in a lot of pain and all I wanted to do was take a nap but didn’t because I knew my family would not understand and think I am being anti-social. I have social anxiety and will not go out of my way to talk to someone I don’t know but I am not going to make an extra effort to get out of a social gathering I am turning thirty next month and will celebrate my birthday but I don’t want a huge party, and it’s not because I am anxious but there are a lot of trigger at parties that can make them miserable in a matter of minutes. I want to be able to participate in social events and enjoy them but I would hate for someone to go through all the trouble of planning a party and I not like it that much.
It’s not the same as occassional migraine– People sometimes think they can relate to chronic migraine because they got a migraine once or twice. If you have ever experienced a migraine you may be able to understand that it’s horrible but can’t relate to what it’s like to live with chronic migraine that you could get once a week. Chronic migraine is more frustrating than occasional migraine because people that only get it occassionally can’t even begin to understand the fear of when your next attack with be. When you only get a migraine during the holidays you get it and are done with it but with chronic migraine it’s a constant battle that you can’t win.
I am well aware I need to drink water to prevent attacks- When I am having a high pain people sometimes people will not understand and think they are giving me great advice when they tell me to drink water. I roll my eyes every single time people suggest I drink more water and want to say so badly “that’s genius I hadn’t thought of that.” I know people mean well when they suggest water but you are giving me duh advice because every migraineur or headache sufferer knows that you need to drink water to prevent attacks and I probably already started chugging water hours before you suggested it. If I get a migraine I probably don’t know why I it happened but I can tell you one thing for sure it’s not because I am dehydrated!
Excedrin is not a miracle medication for everyone- People seem to think that Excedrin is a miracle medication that will cure everyone’s migraine pain in twenty minutes. I stopped telling non-migraine sufferers when I am not feeling that great to avoid listening to people constantly say “have you tried Excedrin?” TV commercials make Excedrin seem like it’s a miracle medication that cures all types of migraine pain but if it really worked as well as everyone thinks it does we woulldn’t need all these other medications with horrible side-effects. Excedrin works for some people but like anything it doesn’t work for everyone and for some people it make their pain worse. I have tried Excedrin and wish it worked because it is not nearly as hard on your body as my preventative but I get almost zero relief from it. The only time you will find me taking Excedrin is when I am on my period and need the extra caffeine to get relief from cramps.
Your perfume can instantly trigger an attack- Perfume and scented products can be a major trigger for many people that live with migraine. I am triggered by scented products and do not use any perfume except one I got as a gift that I am not triggered by because it’s made with essential oils. People that wear too much perfume or cologne I have to distance myself from because more often than not I am triggered by what my peers are wearing. I am not going to tell family and friends to stop wearing scented products when I am around them but you shouldn’t be surprised if I distance myself from you because of the scented products you are wearing.
I never drink alcohol- Most of my family know that I never drink alcohol because they hang out with me a lot or read my blog but occasionally people will ask are you drinking alcohol yet? Before I had pain I occasionally had a glass of wine and didn’t give up because I wanted to be healtheir but I had to for less pain. On Sunday I did communion at my church and grabbed wine by mistake instead of grape juice and because I am so afraid of the pain taking me out for a week I did not drink it. It was such a small amount and probably would have been fine but it wasn’t a risk worth taking. Most people my age do drink and some people don’t believe me when I say I never drink alcohol but I truly don’t and if you understood my pain you wouldn’t either. It was hard to give up wine at first but now since it’s been a couple of years I don’t even remember what it tastes like and don’t miss it as much as I did that first year.
Self-care is not always easy– There are days I will make effort to do my hair and look presentable, but I will not do that every day because sometimes my arms are heavy, and I can’t do something as simple as straightening my hair. Some people will be like if you did a little every day it would make self-care easier and for most people that is true but for people that live with migraine or any kind of chronic pain it’s not always going to work out that way. Some people with chronic migraine are able to push through attacks but not everyone will be able to and sometimes you just have a wildly unproductive week. I hate it when I have to shower on bad pain days because although hot water can help relieve some tension it’s still hard to do it when you have minimal energy.
I wish there was a way to help my family understand that chronic migraine disorders are not just a headache but a full-body experience. There is a lot of stigma surrounding migraine disorders from people who have never experienced them because people tend to think that the cure is as simple as popping a few Excedrin but if it was that easy there would not be millions of people struggling with it. I don’t expect families to fully understand the pain of migraine attacks but when you call it a headache you make it so obvious that you don’t understand because no migraineur would refer to them as a headache and it’s so much more! There are so many things that my family does not understand about chronic migraine, and I don’t expect them to, but I do expect that you listen to people that live with migraine disease and educate yourself to end the stigma. The problem with migraine disorders isn’t that they are any worse than any other disorder, but people (even doctors) think that you can power through and don’t believe it’s real pain. There is no cure for migraine disorders and although preventative medication can decrease attacks in some people it’s not a cure and there will still be bad days. What do you wish your family understood about chronic migraine?