I came across a blog post about chronic migraines that was pretty spot on. I can't say that it is exactly what I would have felt or written, but it really was good. I have heard every single one of these things, from people that mean well, but don't completely understand how it is to live with an invisible chronic illness. (And how can one understand, having not lived it? Not really possible. I know this.) So, in the interest of pure education, I will repost the article. The post was originally on Migraine.com, posted by Ellen, and entitled
The Migraine Dirty Dozen--Things Not to Say to a Chronic Migraineur. And now, I quote:
"Dear family and friends of chronic Migraineurs;
I write today to tell you what your loved ones probably will not – a list of the top things the Migraineur in your life will have a visceral, negative reaction to when heard coming from someone they care about:
The Dirty Dozen
1. If you could just lower the stress in your life. Migraine is not caused by stress, and although lowering stress levels is good for anyone, this will not eliminate our attacks which are both
genetic and neurologic in nature. Saying this will
cause additional stress to us though, because we have enough to deal with in our lives without feeling guilty and judged by those we care the most about. What we need the most is acceptance and to know that you are there to help us when we need it the most.
Next time, why not offer to lighten our stressful load instead of making a comment that is not helpful.
2. You look so good/ You don’t look sick. Chronic Migraineurs use an enormous amount of energy trying to look as normal as possible, and we want to know that we have been successful. However this statement sounds condescending and judgmental to the chronically ill – as if we must not have a real disease because you cannot look at us and see the ravages it has caused in our lives. We know you don’t mean to hurt us, but if you could see the results of our disease on the inside of our bodies and our lives, you would be shocked and take a much less cavalier attitude toward our struggles.
Next time, why not simply say “I am SO happy to see you today!”
3. It can’t hurt that bad. Migraine, especially chronic Migraine is one of the worst kinds of pain there is, and is often undertreated enough to cause disability to the patient. Add to that the nausea and vomiting and
other symptoms we suffer sometimes daily, and the symptoms work in concert with each other to create a situation from which we cannot escape yet may become desperate to try. Chronic Migraine results in
suicides that happen every year, devastating lives across the board.
Next time, why not try asking what you can do to make the Migraineur feel better.
4. It’s all in your head. Clinical depression and Migraine are both primary (not caused by anything else) diseases involving neurotransmitters such as Serotonin. While it is common for clinical depression and Migraine to be comorbid — especially chronic Migraine — it is certainly normal for anyone with a chronic disease to become
depressed as a result of their experience and should be expected as a normal result of the patient’s illness that can be minimized, treated and helped with a knowledgeable physician and a good support system. Migraineurs are not crazy, lazy or seeking attention. They have a disease. While it is usually not yet possible to see changes in labs or imaging in the Migraineur to prove their neurological disease exists , other physical signs abound and may include increased heart rate, respirations and blood pressure, dizziness, weakness or paralysis, the inability to speak, nausea and vomiting, among other symptoms and signs. Migraine is genetic and cannot be controlled by the Migraineur beyond the scope of seeking treatment from a headache specialist and their team who will try to prescribe medications and treatments which may or may not work for any individual patient.
Next time, why not ask what you can do to offer support to the Migraineur.
5. It’s a “woman thing”. Please, let’s not take this back to the dark ages when epilepsy was “demon possession” and “hysterical” women with tight corsets suffered “the vapors”. Men experience Migraine. Children experience Migraine too. There are physiological differences between males and females of every species, and this is a good thing. These differences make life much more interesting. Some of those differences can also trigger Migraine in those people with the genetic capacity for the disease. A frequent trigger is
reproductive hormone fluctuations. Unfortunately for women, their reproductive hormones are designed to fluctuate, and lucky for men their hormones are meant to remain more stable. Hormones are only a small part of the Migraine picture though, and only one of thousands of potential triggers.
Next time, consider asking the Migraineur about their particular triggers instead.
6. You can work through it. Chronic Migraine is recognized as a disabling, systemic disease by patients who experience them, as well as physicians who treat them and even the government who offers
Social Security Disability to those who suffer from it. A Migraine attack often is worse than the worst flu a non-Migraineur can imagine, yet is often refractory to the easy to find treatments used for a case of the flu. Once the flu goes away you’re done. Migraines come back over and over and over again, sometimes for decades or a lifetime. Chronic Migraine is relentless.
Instead, why not suggest a shortcut to make their job easier, or offer to help them until their medicine begins to work.
7. Take a pill. Migraine is a
genetic neurologic disease spectrum of which pain is only one part. You probably didn’t know that a patient can have a Migraine without the pain component at all, or that Migraine attacks can range from relatively mild, to life threatening. You might not realize that most chronic Migraineurs take preventive medicine every day. No two patients are alike, and what works for one will not work for another. Many episodic Migraineurs can take a medication and abort their attack and continue with their day – most of the time. Some cannot. Chronic Migraine often necessitates taking abortive or rescue medicine more days than not, and we are limited because those medicines can
cause enormous problems of their own. Additionally, insurance only gives us a few to take each month and they can cost hundreds of dollars. Some days we have to make the choice not to treat a particular attack, because if we treat that attack, we won’t be able to treat another one that might be worse. Frankly, telling someone to take a pill is hurtful to the chronic Migraineur. We don’t want to be miserable and would take medicine if we could.
Next time, why not ask if you can help the Migraineur by turning off lights, down audio or ventilating a smelly room to help with comfort issues.
8. It’s just a headache. Actually, it’s not. Migraine is a systemic disease that affects nearly every part of our bodies, from digestive to circulatory to endocrine, to nervous system. Chronic pain eventually results in
central sensitization and allodynia that causes severe pain throughout our entire bodies. If the disease itself isn’t hard enough on the body, the treatments we are forced to take wreak havoc, often causing even further damage and disability.
Next time, try asking the Migraineur about their symptoms so you can understand their experience and possibly help them with their next attack.
9. Go get a hobby, it’ll take your mind off the pain. If you break your arm, will getting a hobby make your pain go away? Of course it won’t. Yet a Migraine makes a broken bone look like fun at the circus. While distraction is a recognized and effective way for patients to better control their pain, this is a technique that requires immense concentration and practice much beyond a simple hobby. The worse the pain is, the less the chance that the distraction will be helpful. In either case, distraction will not prevent an attack, nor will it treat or “cure” Migraine. Migraine is a genetic, neurologic disease over which the patient has little to no control.
Next time, try asking the patient if there is anything you can do to help distract them from the symptoms of their attack.
10. I read about something new that can cure Migraine or
Have you tried this? It worked for a friend of mine. While Migraineurs want to know that our loved ones are thinking about us and want to help us, the chance that you have stumbled upon a miraculous treatment or “cure” that our specialists – or we who have suffered terribly with this disease – have not, is miniscule beyond measure. Everyone bombards us with the same information, and we’ve almost always tried it repeatedly ourselves anyway. We weary of the constant suggestions – not because we don’t appreciate that you care, but that it makes us feel even more helpless and reminds us that we have failed yet again where others have found success.
If you truly want to be helpful, ask us what you can do, or what we might need. If you feel compelled to tell us about the latest treatment you read about or heard about, at the very least
please preface it with the statement “I know you’ve probably already heard of this, but I wanted to ask just in case…”
11. You just need to get outside for fresh air and exercise more. While exercise is sometimes helpful for Migraineurs when they are not in the midst of an attack, chronic Migraine often means back to back attacks that leave the patient no time to go outside or exercise. Additionally, exercise is frequently a trigger for Migraine attacks, especially in those who are chronic. If we are seeing a specialist, we have most likely also seen a physical therapist that is helping us with needed exercise in ways that will be most effective for our particular situation. Moreover,
the sunlight we are exposed to outside may cause physical pain as a part of our attack, or act as a potent trigger for another attack. Exercise and the out of doors is something we all miss, but it is a slippery slope we must navigate with care. It will not “cure” our Migraine disease.
Instead, the next time you see us having a good day, offer to take us to the park or go for a walk with us.
12. At least it’s not fatal. Unfortunately, this is not true. Though rare,
Migrainous stroke takes the lives of patients every year. Migraine – especially chronic Migraine – has been found to be tightly correlated with other serious or even potentially fatal health issues, and often it is the combination that is deadly. Migraineurs without appropriate treatment are those most at risk of stroke, suicide, and death by related causes such as accidents, depression, accidental overdose, side effects, medical mistakes, etc…
Next time, consider acknowledging the struggle of the Migraineur and remind them how much you love and appreciate their presence in your own life." That's end quote.
And that's it. Now you know. Although, I would like to add one more, make it a Baker's Dozen? ...
Do you drink enough water? I always get a headache if I don't drink enough water. I probably don't always drink enough water (does anyone?), but in the words of my good friend, 'You could drink the Nile (and probably pee the Nile), and it still wouldn't change anything.' True. I've had the kind of headache you get when you don't drink enough water. It's completely different from my chronic condition. Sure, if I drink enough water, it's good for me. But, have you ever tried to go to the bathroom when nauseated, dizzy, and in loads of pain? Yep, not fun. Sometimes it's good to not drink too much water. :)
And you may also want to know that I am nowhere near being suicidal, in case you wondered. Thankfully, I have a Gospel perspective (not perfectly--I am human, after all, and do have hard days) on the whole situation. That's not to say that I don't completely understand how someone could reach that point...there have been a couple of times even this week when I have thought, 'I'm pretty sure I would rather be dead than feel this way', but I know that there is hope and help in my Savior, Jesus Christ. I can rest knowing that He has made all things perfect, and even though it might be hard sometimes now, better things are to come. I re-read an article by
Kent F. Richards just yesterday and found comfort in these words:
"President Henry B. Eyring taught: “It will comfort us when we must wait in distress for the Savior’s promised relief that He knows, from experience, how to heal and help us. … And faith in that power will give us patience as we pray and work and wait for help. He could have known how to succor us simply by revelation, but He chose to learn by His own personal experience.”14
". . . As Elder Dallin H. Oaks has taught: “Healing blessings come in many ways, each suited to our individual needs, as known to Him who loves us best. Sometimes a ‘healing’ cures our illness or lifts our burden. But sometimes we are ‘healed’ by being given strength or understanding or patience to bear the burdens placed upon us.”17 All that will come may be “clasped in the arms of Jesus.”18 All souls can be healed by His power. All pain can be soothed. In Him, we can “find rest unto [our] souls.”19 Our mortal circumstances may not immediately change, but our pain, worry, suffering, and fear can be swallowed up in His peace and healing balm."
Every word is true. Whatever your pain is, whatever your burden is, He knows. He loves you. And He can bear it.
Thanks for listening. :)
