As I mentioned in a previous blog post, my goal for this blog is to share the good and the bad of living with chronic illness, specifically migraines. So to start, I thought I would share a few things you should never say, demonstrate in actions, or convey in glances, to someone with migraines (although these phrases do apply to other chronic illnesses as well):
1) "It can't be that bad": This phrase illustrates that the person has no concept of pain, or experience with the ill. It really can be that bad, and just because you don't feel it doesn't mean that it doesn't exist. When someone says this, it dismisses the struggles of the ill. When we already feel completely miserable, questioning the severity of our pain enrages us. We are taught empathy for a reason.
2) "They are faking it to get attention": There is a difference between good and bad attention, and being sick definitely falls under the 'bad' category. Nobody should want to be sick or to experience the pain someone who is sick is in. When you are ill, you still have to balance your physical, emotional, and social lives. For example, when I begin to have involuntary movements or language disturbances, in no way am I trying to get attention. I am actually putting every ounce of my energy into stopping my symptoms. When you are in public experiencing your disease, it can be really embarrassing. Questioning the ill's intents only further damages our mental stability, which usually isn't great when you are sick almost all the time.
3) "They should be able to just push through it": Someone who says this has absolutely no idea what we have done to stop our illness. When a migraine gets rolling, it is almost impossible to just "push through". Example: Since I am 14, I still go to school. This means that I still have to take tests. Which means I have to sit for a long period of time while doing something that is one of my biggest triggers. There have been countless times when halfway through a test I have to stop because I am getting a migraine. Sometimes I go temporarily blind or partially blind while taking a test. This symptom makes it a little difficult to solve math problems. The problem with this is that I usually ignore my symptoms trying to get through the test. I hate the fact that I have to stop because I feel like I am giving in to my disease. Never mind the fact that because I let the migraine go on for so long the migraine could become a cycle (meaning that it could go on for weeks and become untreatable). I would much rather stop to treat the migraine than let it go on for weeks. In addition, if I finish a test with a migraine I score worse because I have mental confusion and memory loss. Once I had a migraine while taking a math test, but pushed through and finished it. When I scored poorly, my teacher allowed me to retake the same test because she understood that due to my memory loss, I wouldn't know what was on the test. There was a twenty point difference between the two tests. I think it is safe to say that "pushing through" a migraine, is no way to go about managing a chronic disease.
4) "It's just a headache": To all the people who believe this misconception, you enrage me. Your lack of understanding for an illness that is the third most prevalent in the world is absurd. I understand you may have been misinformed, but allow me to explain. There are several different types of migraines. For some people, their migraines are headaches, for some, they are headaches with aura, for some they are vertigo, for some they are stroke like symptoms, and for some, their migraines are categorized based on the fact that they are temporarily paralyzed. Migraine effects every body system, and every part of the brain. It is most definitely NOT just a headache.
5) "At least it's not fatal": Oh, but it is. Migraines can cause a variety of problems. These problems include strokes, which are deadly. Chronic disease can also cause mental health issues. Mental instability can lead to suicidal thoughts which could potentially turn to actions. Also, chronic disease usually requires medication. The medications utilized could cause adverse reactions that diminish quality of life and could prove fatal. No, people usually do not die of migraines, but yes, it is possible.
6) "Just take out the stress in your life": Stress may be a contributing factor in some chronic diseases, but that is not always the case. Without understanding what may trigger symptoms of the illness, it is better to not comment on stress. With me for instance, stress is not a migraine trigger. I can be as stressed as I want and not get a migraine. I am not saying that stress isn't a trigger for other people, I am just saying it doesn't cause everyone's disease to worsen. Furthermore, other emotions can trigger episodes. When I get frustrated or start to cry, I nearly always become symptomatic. Triggers depend on the person and the disease.
7) "It's all in your head": Unless you have medical training, you are not educated enough to make that assumption. With chronic illness, it is likely the sufferer has a team of doctors. When multiple doctors all agree on a physical explanation for the sufferers symptoms, it is degrading for someone to question the nature of the disease. Just don't do it.
8) "It's a women thing": NO IT IS NOT! Specifically with migraine, 6% of men experience migraines. Yes, more women than men get migraines, and yes, our hormones may contribute to our disease, but no it is not just a "women thing". That comment is sexist.
9) "Have you tried this?": Yes, yes I have. Actually, I have tried pretty much everything. Meds, Diets, Bio feedback, Acupuncture, Chiropractics, Vitamins and herbal supplements, salt baths, etc. Please don't suggest any treatments. Unless you know the details of my treatments, or have medical training, it is rude to propose you know more than I do about my illness.
In conclusion all these phrases should be avoided. The reality that someone could potentially question such a paralyzing disease shows just how corrupted our perceptions of illness are. When someone is that ill, phrases like those blow our mental stability. When you don't have guaranteed health, losing support can really put you down. Instead, it is best to say something along the lines of "how can I help?".