2 Sufferers, 1Like Mind

Internalizing the Stigma of Migraine

By Kerrie Smyres—July 12, 2013

Every time I have a migraine, there’s a voice in my head that questions whether I’m just being lazy. Even after after five years of practicing listening to my body, extensive therapy, and lots of meditation and self-reflection, I catch myself questioning the legitimacy of my migraine symptoms. Not so much the pain — that’s pretty hard to deny — but the fatigue, brain fog, and general malaise.

I did it again today. After two days of traveling to get to Seattle, where I’m housesitting to escape Phoenix’s monsoon season, I woke to an overcast day. Exactly the kind of day that triggers migraines and prevents me from living in Seattle. I was clearly in a migraine, though the preventives I’m on kept the pain at a level 4. I can physically function at that level, but thinking is tough. Unfortunately, thinking was my primary goal for the day and I was agitated that I couldn’t focus or construct coherent sentences. And I wondered if I was just being lazy, especially because they pain isn’t that bad.

Though quieter than it was five years ago, that voice nagged at me for hours: “You should be doing more. You’re choosing to read over working. You’re not that sick. Just take out the computer. The migraine’s not that bad. You’re being lazy. You haven’t written in a week. You need to be productive.” Then the clouds cleared out and I began to feel a bit better. The first thing I wanted to do? Write. I was not procrastinating or lazy this morning, I was sick. Why is it so hard for me to grasp that obvious, fundamental truth?

The stigma of migraine and society’s belief about illness in general and migraine in particular have occupied my mind a lot lately. I have to wonder if I and so many other migraineurs berate ourselves not only because other people regularly distrust that migraine is a true physical illness, but because we have internalized those same doubts.

This is where the stigma of migraine is especially damaging. Dealing with people who don’t understand — and don’t seem to want to understand — what we’re going through is frustrating and infuriating. Believing it ourselves is way more harmful because it demoralizes us and causes us to question the legitimacy of our own experience. Instead of treating ourselves with compassion, as we would a loved one who was sick, we criticize ourselves for being lazy or unproductive. We push through our pain and other symptoms instead of nurturing ourselves. We dismiss our struggles as not that important. All of this reinforces the message to ourselves (and others) that migraine is not a serious, life-altering illness.

Worst of all, these beliefs fill us with guilt and self-doubt. Even when we “know better,” when we accept as fact that migraine is real and our symptoms are debilitating, we don’t always embrace these beliefs emotionally. My therapist would say it is the difference between knowing something intellectually and knowing it in our hearts. I’ve had the intellectual part down for a while, the emotional aspect still eludes me.

No matter how much I write about the needs of migraineurs and work to reduce its stigma, that very stigma has insinuated itself into my self-perception. It will continue to haunt me whenever I have a migraine until I accept in both my mind and heart that I am not deficient or lazy, but have an illness that is in no way a reflection of my personality, desires, or attitude. That’s a tall order. It’s also my greatest wish for all migraineurs — that we all find a place of internal peace where we can separate who we are from this illness and accept that having a neurological disorder doesn’t make us wrong or bad or broken.

Side note: Kerrie Smyres, I hope you don’t mind me publishing this article on my blog. It speaks to me so much. I have said these same things repeatedly. Your writing is spot on! Stay strong, Judi #AlwaysKeepFighting

Loss Of Cognitive Function

Treating “migraine brain”

By Tammy Rome—August 1, 2014

Anyone who has ever experienced a migraine will tell you that it is nearly impossible to think clearly or communicate effectively during an attack. Many will attest to residual problems during the postdrome as well as preliminary problems during the prodrome. For patients with chronic migraine, the ability to think and speak coherently can appear to never end. I have even talked to migraineurs who are skeptical of current research that claims there are no lasting cognitive deficitsresulting from white matter lesions so often found on the MRIs of long-term patients. To be fair, the research has produced conflicting results. It’s just too soon to know for sure.

What is known is that stress and pain can significantly impact our mental functioning. Our bodies go into a type of “high alert”, favoring action over manners or political correctness. Live with pain and stress long enough and it’s bound to take its toll on your brainpower. Part of the reason may be environmental. I’m not suggesting there is not a biological explanation for migraine-related cognitive impairment. Instead, I’d like to suggest that it is possible to do something to offset that “migraine brain”.

You can learn to compensate for what the mind fails to do (i.e. word loss, forgetfulness, etc.). People with irreversible cognitive damage are often taught how to use specific strategies to compensate for their disabilities. These same strategies are taught to children with ADHD to help them stay on task. They will work equally well for migraineurs.

There is one catch. The professionals who teach these skills are not medical doctors. Most are counselors, therapists, social workers, and psychologists. I realize that some patients have been referred to mental health professionals as a way to “patient-dump” or because their doctors believed their pain was psychosomatic. The topic of mental health can be a very raw subject for a lot of us. If you will indulge me, I would like to try to redeem the reputation of my profession.

The therapies employed focus on compensating for cognitive deficits called Executive Functioning Skills. These are eleven skills that govern our behavior, regulate our emotions, and set and achieve goals. Depending on genetic, organic, and environmental factors we each develop a unique blend of skill strengths and challenges. Apparently, migraines impair our ability to use these skills, too.

Take a look at the list of skills and see if you can identify with any particular skills. You can also download a brief questionnaire to help you discover your strengths. In future posts, I will introduce a variety of strategies you can use to compensate the next time “migraine brain” takes over.

Executive Functioning Skills

Response inhibition: the ability to think before you speak.

Working memory: the ability to remember lists, dates, phone numbers, and tasks.

Emotional control: the ability to prevent your emotions from interfering with a task until it is complete

Sustained attention: the ability to focus on one thing at a task until it is completed

Task initiation: the opposite of procrastination, particularly when the task is unpleasant or boring

Planning & prioritization: the ability to identify and commit to priorities when there are many competing tasks

Organization: the ability to keep things organized and neat

Time management: the ability to accurately estimate the time it takes to complete a task in order to meet a deadline

Goal-directed persistence: the ability to delay pleasure in order to achieve goals

Metacognition: the ability to be objective about oneself accurately

Flexibility: the ability to handle surprises and make adjustments ‘on the fly’.

Sunday Morning Thoughts

So. Tuesday August 11th is a big “milestone” for me. I air-quote “milestone” for several reasons. The first, it sounds like an achievement. The second, I really have nothing to do with it. I’ll explain. 50! I can’t type that number without an exclamation point anymore than a can type “milestone” without air-quotes. 50! Half a century! A lifetime for many. Never enough time for most. My life, up until this point, has gone by both in the blink of an eye and a slow motion series of days, weeks, months, etc. My childhood is remembered as birthday parties, pony rides, friends, and fun. I’ve had time to block the bad times. The chemical imbalance that often left me unable to go to school, keep friends, and participate in my own life being the issue. Psychiatric hospitals to find a treatment. Fear, confusion, loneliness, doctors, other patients like me. Mom and Dad crying. At their wit’s end to get me the help I so needed. Medications. So many pills. Side effects. Visits home for a few hours and feelings of desperation to go back because the hospital felt “normal and safe.” A handful of these episodes throughout my teens. Finally, in 1984, two miracles. An incredible doctor and Prozac. One little pill changing my entire life. An answer. Dr. P. explained that my depression, panic attacks, and OCD episodes were all from a lack of seratonin in my brain. The Prozac supplied what was missing. I was a new person. At age 19, I could finally start to live my life. I continued visits with Dr. P. outside of the hospital for quite a few years. He helped me put things into perspective. He helped me when I backslid, and celebrated my victories with me. He explained so much. Made things make sense. He saved my life and I’ll never forget him. I’ve allowed myself to remember those times as they were a part of who I am today. The good and the bad. My parents were beyond patient. They had no idea what was wrong with me, but never gave up fighting for me. I am horrified now by how I treated them back then. I was out of control and angry. Not knowing why. I’ll never be able to express to them how grateful I am for their love and support and perseverance. They never gave up on me and are forever heroes in my heart. 50! Still in shock. I worked many jobs. Never sure what I wanted for myself. I wound up, purely by chance, in the dental field and never looked back. My last job was as the Practice Manager of 2 large, prestigious dental offices. I loved my job! It was fun, infuriating, challenging, and I fully expected to retire from there when the time came. What do they say? We plan while God laughs?! I got sick. In 2008 I was diagnosed with fibromyalgia and migraines. I continued to work until 2011, when the migraines became chronic. Daily migraines. More doctors, hospitals, treatments, pills, shots, etc. The depression and anxiety came back full force as I fought through these illnesses. Flashback to my childhood. I was determined not to let these feelings take control as they had when I was so young. I knew the medical illnesses were causing the psychiatric issues. Chronic pain and depression go hand in hand. I know that now. It makes sense. Excruciating pain every day is going to effect your brain, your emotions. Just knowing that makes it a little easier to keep fighting. I’m now unable to work, basically homebound. I manage to get to my doctor appointments and some errands, but don’t go out much for fun. I’ve lost “friends.” I’ve lost the ability to travel, which I loved. (Thankfully, thanks to my parents, I got to experience Europe and other incredible trips in my 30’s!) I’ve been fighting for disability benefits since 2012. I was denied twice. Still waiting for an appeal hearing date from my lawyer. Things are bad right now. They’ve been bad and gotten worse for the past few years. I’m still actively seeking proper treatment for my illnesses. I’ve depleted any savings that I had, and am currently living with my mother. We’re leaning on each other. She is paying my bills. I am again reminded of my childhood, and, once again, one of my heroes has jumped in to save me! I am trying to remain positive. It’s hard. In some ways I feel like a teenager again. Living with and dependent on a parent. But it’s different this time. I’m not the same person I was. Pain changes you. This is why I don’t feel 50. I missed a lot. I was stuck, but time kept passing. So I may argue, deny, and hate turning 50, but it certainly beats the alternative. Better days ahead. #AlwaysKeepFighting

Pleading For Help From SSDI

July 24, 2015

Social Security Administration

Re: Dire Need Letter

wpid-wp-1432820269510.jpegIn February 2008, I was diagnosed with Fibromyalgia, now known as Systemic Exertion Intolerance Disease. In July 2008, I was diagnosed with rheumatoid arthritis and polyarthritis. In April of 2010, my GP diagnosed me with intractable migraine, later confirmed by a headache specialist as Chronic Daily Migraine. As I tried to deal with these debilitating diseases, and continue to work and go to school, I became severely depressed, anxiety-ridden, and had frequent panic attacks. It was at this point that I could no longer work or continue school. I am currently seeing a pain management specialist, a psychologist, and a psychiatrist.  I am writing to ask that my case be reviewed as “Dire Need.” I have been unable to work since 2011 due to multiple medical conditions. I have depleted my savings account and my IRA, lost my apartment, sold my car, moved in with my elderly mother, and have no income of any kind. My medical bills are in the thousands, my medical insurance is $481.00/month with a $700.00 deductible. That is the cheapest plan I can get with an immediate prescription plan ( no need to wait for deductible to be met). My prescriptions vary monthly, but are usually in the hundreds. My copays range from $30. – $50., and my co-insurance is 20%. I do not qualify for a subsidy because I have no income. I do not qualify for Medicaid until SSDI benefits are approved. I have collection agencies calling and threatening to report me to credit companies if I don’t pay. They call day and night and send notices weekly. My mother is on a fixed income and her savings and retirement are depleting rapidly. She is paying for my medical insurance, doctor visits, co-pays, coinsurance, prescriptions, and unpaid bills from 2012 forward to avoid collection action. She is paying monthly payments to my cell phone, credit card, which is maxed out, all of my doctors, hospital, and medical test bills. We are contemplating moving into an apartment in another state to lessen monthly costs. My mother cannot drive due to macular degeneration and I can only drive if my symptoms allow and if I haven’t taken any medications. I cannot afford cabs and have lost any friends who used to help, due to my illnesses. We have no other family in the area. If I miss an appointment, there’s another fee. I also need dental work, but haven’t been to the dentist in two years due to lack of money. My lawyer and I filed for an Appeal Hearing in September 2014. I’m still waiting. The money is almost gone. I am desperate and out of options. Please consider expediting my hearing or deciding in my favor without a hearing. My lawyer has sent all of my medical records to you. Thank you in advance.