The Insecurities of a Chronic Migraineur
Coping with chronic migraine is painful, frustrating and lonely. Most people who have never had debilitating, throbbing head pain — or maybe it’s been too long to remember — do not understand what it is like to avoid the world in every way possible on most days. Sometimes, it’s just not possible. Sometimes the pain is so severe a trip to the ER is undeniable.
There are so many migraineurs who seek out help at the ER needing quick relief for such a long-lasting agony — even if that relief is only five minutes long. The thing is, sometimes the ER lights, noises and smells can aggravate the migraine even further. Sometimes the doctor isn’t as understanding as you would need. It’s the toss of a coin – you never know if you’ll get a doctor who can empathize with your situation, or one who feels you are a drug-seeker and faking symptoms. Unfortunately for those with painful conditions, like migraine, we are sometimes not taken seriously and not given the attention we deserve.
As time moves on and migraine becomes part of your daily life, many insecurities also move in, smelling up the place. So many insecurities, like dirty socks overflowing the hamper. If you’re a parent, you become insecure about the type of mother you are becoming. If you’re a pet parent, you worry about who will feed your dog on days you just can’t move. If you’re in a serious relationship, you worry about meeting the needs of your partner both sexually and emotionally. You may worry about what type of employee you are becoming and you might feel like you’re letting your company down.
Have you ever felt like a bad patient to the doctor or ER? Why would anyone feel insecure about visiting the hospital if they are there to make patients feel better? Patients visit their doctors and hospitals to get medical care and help them find peace. After so much time spent visiting the same doctor or multiple visits to the same ER with head pain or various other neurological symptoms due to migraine, doctors may begin to lose empathy or their patience may start failing because their treatment is not working. Frustration from the patient leads to an angry patient, which leads to a reluctant doctor. This is understandable on both parties, but sometimes there is just no solution. It might just be time to find another doctor, another set of eyes, ideas and a fresh start. If this happens multiple times, though, you might become insecure and worry about starting all over again, thus repeating your symptoms over and over again to many doctors and specialists.
When a patient jumps from doctor to doctor and they don’t keep records and dates, it’s difficult for new specialists to know what might work. Keeping detailed records of doctors, medications, dates and places will most likely mean a happier, more willing doctor. A willing and understanding doctor will lead to a less frustrated patient and might make you feel like the doctor is actually taking you seriously.
On the other side of that, take into consideration the ER doctor who doesn’t believe patients immediately once they see “migraine” on the patient’s history chart. Maybe you told the registration nurse at the ER you think you might have a severe migraine? The word “migraine” alone causes some doctors to roll their eyes or put you at the bottom of their list. I’ve seen it happen. Sure, the nurse will turn off the lights to help with photophobia, but most of the time, in my experience, it takes a good while before you are seen by the physician. Obviously, this is the case with most patients, whether there is pain involved or not. Unfortunately, for migraine patients, the head pain and various neurological symptoms are already heightened. Why else would you be there? Blood needs to be drawn and tested before any IV fluids and medications can be administered, something we can’t avoid, but an empathetic smile and a calming bedside manner always works best with pain patients and goes a long way.
Those of us who have battled chronic migraine for years already know what works for us. We know exactly what we need. Yet, there’s an insecurity to let the doctor know what helps us. Why? Because some doctors feel we don’t know what we’re talking about – they’re the doctors, not us. They know best and will give us whatever “cocktail” of migraine medicine they believe “always works.” When they find it doesn’t work with you, then they ask what it is that always does, upset and reluctantly asking your opinion. Frustration at its finest. The insecurity in this scenario is not being heard the first time. It may cause you not to speak your truth in order to avoid the nasty looks and arrogant replies from the doctor. The apologetic looks from the nurses as they follow the doctor out of the room.
When I am forced to visit the ER due to severe migraine symptoms, I start to panic and anxiety is now part of my symptoms once I am placed in a bed. Why? Because I have no idea who my doctor will be, whether he will be empathetic to my situation, if he will listen to me, and/or if he will consider my past medications that work. Insecurity of whether or not he will decide I am a drug-seeker because I feel like my pain level is a 10 that day. Will he/she even believe my pain level is at an eight, and I just can’t handle it?
Insecurity: It’s often part of a chronic pain condition. It will be there even when you aren’t paying attention. It’s part of your daily thoughts, even when you aren’t feeling that much pain that day. Why? Because the “what ifs” can plague our minds. What if I do too much today and trigger a migraine? What if I trigger a migraine and have to go the ER? What if this migraine is just too painful and I can’t peak outside my covers because the light is too bright? What if I can’t make dinner and my husband is going to come home too late to feed the kids? What if I’m late to work, again, and I get fired this time? What if showering makes me so tired I can’t go to work at all? I can’t just “suck it up” – it’s not that simple.
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Thinkstock photo via artant.
Erica Carrasco, aka Achy Smile, lives with hemiplegic migraine. A native of Midland, Texas, she now lives in Garland, Texas with her husband Stephen and their son Noah. Their daughter, Marissa, who lives with chronic vestibular migraine, is a Senior in college. Noah is a Sophomore in college living with episodic attacks of retinal migraine. In late January 2018, Erica shared the stage with prominent women in the health industry and talked about her life with migraine at BlogHer Health, an annual blogger conference for women. In early 2020, Erica joined over 200 advocates at Headache on the Hill, where she discussed with Members of Congress about what it's like living with hemiplegic migraine and not having access to doctors trained in headache medicine. She is the 2022 winner of the Creative Contributor category of the Health Union Social Health Awards. Achy Smile is a Partner of the American Migraine Foundation and the Association of Migraine Disorders, is the Director of Marketing for Chronic Migraine Awareness, Inc., and makes migraine awareness t-shirts and gifts for those with neurological disorders at Achy Smile Shop between attacks.
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