11 Tips for Dealing with The Healthcare System When You Have Headaches
As a long-time headache sufferer, I have discovered that one of the most challenging aspects of dealing with migraines or any other types of headaches is handling the healthcare system.
Both doctors and insurance providers can be a right pain (pun intended) when it comes to headaches. In fact, they are often completely unhelpful.
In fact, we can look at how unhelpful the healthcare system is to headache sufferers in terms of numbers provided by the Migraine Research Foundation:
- While there are an estimated 39 million people with migraines in the US, there are only around 500 certified headache specialists in the country to serve those 39 million people.
- Around half of all people who experience migraines never receive a diagnosis of migraines.
- Only around 12% of migraine patients are estimated to receive preventative treatment.
- The NIH only spent $.50 per migraine patient on migraine research and 2017.
So you can see that while headaches are a very debilitating and extremely widespread condition, the healthcare system does not place a priority upon treating them.
If you do not learn how to communicate clearly about your pain and advocate for yourself, by default, the mainstream medical system will ignore you.
As another example, take a look at what insurance will and will not cover when it comes to headaches and pain-related conditions in general.
While there is plenty of variation, if you investigate your own insurance plan, you will probably find some coverage gaps connected to both headaches and conditions which can cause them.
For instance, almost every insurance provider in the USA has a caveat stating that they will not cover anything relating to TMD (a.k.a. “TMJ”) and the pain it causes.
They will sometimes make an exception if you cannot chew your food. But extreme pain by itself is not considered relevant and treatment-worthy. If you attempt to pursue treatment on your own, they will consider it “elective.”
So what can you do about all this? I mentioned that you need to advocate for yourself. But how do you do that?
Below are some recommendations based on my experiences dealing with doctors, insurance providers, and head pain:
1. Understand that doctors want cases they can fix quickly. But not all cases do!
Until you know what motivates doctors, you cannot effectively deal with them. So it is important to understand some of the reasons why they tend to ignore patients who come in with head pain.
Like any other type of professional, your average doctor enjoys feeling competent and having a record illustrating numerous professional successes.
The trick to building such a record and feeling such a sense of accomplishment is to take on cases that are easy to diagnose and treat.
Because headaches are poorly understood by doctors and researchers, vary tremendously from patient to patient, and rarely have a simple, sure-fire cure, doctors find them frustrating to treat.
They provide no instant sense of gratification and achievement. They do not help the doctor to build a record of successful cases.
This means that you need to find a doctor who is motivated by something else.
In some cases, this might be a sense of professional curiosity and a desire to solve a puzzle.
In others, it could be a genuine desire to help you feel better.
In either case, that motivation will need to be a significant enough driving force to overcome the frustration at not being able to instantly solve your problem.
So when a doctor is evaluating you, you also need to be evaluating them by trying to determine what their driving motivation is and whether it will compel them to take you seriously or push you out the door.
If the doctor does seem to be trying to push you out the door, my advice is to look for a new one instead of trying to force this one to take you seriously.
Even though moving from doctor to doctor is time-consuming and frustrating, in the long run, it still tends to be more productive than fighting uphill with someone who genuinely does not care about your situation.
You have enough to do fighting your pain. You shouldn’t have to fight the person who is supposed help arm you up for your battles.
2. Know that pain is a subjective experience, and that you may have a hard time describing yours accurately. Keep trying!
Sometimes, difficulties dealing with healthcare professionals have less to do with professionals not caring and more to do with a failure to communicate.
Communicating about pain is challenging for a couple of reasons.
First of all, pain is subjective. Secondly, there is no way to create a standardized, objective scale to describe that which is inherently subjective.
Of course, you are probably familiar with the “rate your pain on a scale of 1 to 10” which doctors tend to default to.
This scale is notoriously problematic, to the point where numerous alternatives have been devised in an attempt to remedy its ineffectiveness.
The traditional pain scale things look something like this:
Oftentimes, the visual version of that scale is only displayed to children. Doctors talking to adults usually will simply ask for a number, rendering the scale even more vague.
Part of the problem with the scale is that none of us can really say what a “10” is. Most of us can recollect the worst pain that we personally have experienced. But if you have a big imagination, it is always easier to imagine an even worse pain.
When I was first asked to describe my pain on a scale of 1 to 10 (with no pictures shown to me), I told the doctor that it was perhaps a “2.”
The truth was, I was in agony. But I have a big imagination, and to me, there was probably a lot of real estate in the world of suffering between where I was at and where the worst possible place could be. So I gave what I thought might be inaccurate answer in the grand scheme of suffering.
In hindsight, I should not have been surprised that the doctor did not take my situation seriously, and that I was probably just experiencing “some tension.”
Here’s a humorous alternative pain scale by Hyberbole and a Half which went viral:
Even though this pain scale was designed to be funny, it is actually far more descriptive and effective than the traditional pain scale.
Both the images and written descriptions give one a much better idea for what one ought to be saying when describing one’s been to a doctor.
On that scale, I should have been describing my pain as ranging between a 4-6 most of the time in the beginning—back when I was describing it as a “2.”
Just to continue to drive home this message about subjectivity, let’s look at a couple more alternative pain scales.
Here’s another popular pain scale that’s gone viral:
This pain scale is not quite as dramatic as the previous one, though it is certainly more expressive than the traditional one.
If I had gone by this scale, I probably would’ve reported my pain level as being 6-7 most of the time.
Let’s take a look at one more pain scale example. This one is not designed to be humorous, simply descriptive and useful:
If I had gone by this pain scale, I would’ve reported my pain to be at the level of 8-9 most days.
Even though the specific increments are debatable, this particular pain scale has an advantage that the others lack. Instead of focusing solely on a subjective experience of the pain itself, this scale talks about the effect that pain has on a person’s mental health and life.
In fact, that is probably the most useful thing that you can do to describe your pain to a doctor.
I have discovered that it is most helpful in getting my point across to say something like this:
“My pain is interfering with my daily ability to function, do my work, socialize, and derive joy from life.”
Such a description does not attempt to convey the experience of the pain itself (which is probably indescribable, regardless of its level), but instead focuses on something which can be measured—its impact on how you live your life.
As a result, this kind of description is more likely to be clearly understood by a doctor, and is thus more likely to result in being taken seriously.
Some doctors will still demand a 1-10 pain scale answer. What should you say in such a situation?
There is no correct answer here, not the least because doctors themselves (and people in general) can literally have conflicting expectations regarding pain behaviors.
For example, let’s say that you declare that your pain is a “9”, and that you are groaning in agony.
One doctor might figure this makes sense. Another might say, “If your pain was really that bad, you wouldn’t be able to vocalize anymore.”
But let’s say instead that your pain is a “9”, and that you are sitting there soundlessly.
While this might satisfy the previous doctor, another doctor might say, “If your pain was really that bad, you’d be screaming.”
I have encountered both of these examples, so you can see the problem.
One thing I do know is that you should never declare that your pain is a “10” in any general fashion.
If you do this, doctors will not take you seriously as they believe that at this point, you should be unconscious.
I have found that the simplest way to get around the problem of the pain scale is to find a way to define what a “10” is in more subjective, personal terms.
Doing this is actually surprisingly simple. If I am asked to describe my pain on a scale of 1 to 10, this is what I say:
“With the worst pain I personally have experienced being a ’10,’ my pain is a ____.”
This makes it quite clear that you know that the true scale of universal pain probably extends far beyond your personal experiences.
But it also saves you from making the mistake of describing your pain as a “2,” (i.e. “I think I need a band-aid”).
So at that point, if you have declared that your pain is a “9,” what you are telling the doctor is that you’re not hysterical, but the pain you are experiencing is quite honestly very close to the worst pain that you have experienced.
This affords far greater clarity, and proves that you have some perspective.
3. Avoid a neutral expression or tone if you are in a lot of pain. If you’re hurting, it’s okay to sound hurt.
Another challenge in communicating about pain with a doctor involves affect. This includes your nonverbal expressive cues as well as the tone of your voice when you talk.
Pain can sometimes involuntarily alter these things, but there are big differences from individual to individual.
To give an example, consider how autism can alter both the pain experience and the expression thereof.
A flat affect and monotone voice are a common feature of autism.
This article explains, “Recognizing this pain is a serious challenge, however, because people with autism have unusual ways of expressing it. This, too, may feed into a perception that they don’t feel pain … One French study found, for example, that fewer than half of children with autism were given a local anesthetic before having blood drawn, even though this practice was routine for typical children.”
The article also says, “The few rigorous, well-controlled studies in this area hint that the idea that people with autism are insensitive to pain is largely a myth. For example, three experimental studies in which researchers subjected volunteers to a mild electrical shock, pressure, heat or cold suggest that people with autism have normal pain thresholds or may even be more sensitive to pain than others are.”
If you have an unusual way of expressing pain (or not expressing pain), that can throw off your doctor’s perception of what you are going through.
I learned this the hard way. Even when I am in so much pain I wish I could just pass out, I am likely to address a doctor with a neutral, bland expression and tone unless I stop and remind myself that this will not communicate the pain.
If you have to exaggerate your pain subtly when you speak or look at your doctor, just do it. It may feel awkward, but your non-verbal cues can speak louder than your words.
This is also good advice if you are used to “masking” your reactions and emotions in public. In other words, don’t sit there trying to be stoic. It won’t help your cause.
4. Be aware that some doctors blow off pain as a rule. Especially for female patients, so be aware!
I mentioned earlier how insurance companies sometimes consider pain treatments “elective” if no obvious “function” issues are involved (as in TMD).
Doctors often share this propensity to blow off the significance of pain in a person’s life. Unless a system is actively failing, they will announce you are in “good health.”
It gets particularly bad if your issue is “female.” What do I mean by that? I mean issues which predominantly affect women. These include conditions like:
- Myofascial pain
- Chronic fatigue syndrome
- Pelvic pain
- Abdominal pain
As a woman, you are three times as likely to experience migraines as a man would be.
The medical industry has been male-dominated throughout history, so female pain conditions tend to get less attention.
There is also a longstanding belief among many male healthcare professionals that women are hysterical when describing their pain.
But actually, as this article explains, “Further complicating the migraine experience of women is that females exhibit greater sensitivity to laboratory pain as compared to males. Gender differences in pain sensitivity are not site specific, and they seem more noticeable in deep sustained pain sensations similar to the pain of back, neck, and head.24 Not only are migraines more prevalent in this population but the ensuing pain is felt more intensely.”
So pain conditions are more common among women, and also, well, more painful in general.
This is not to say that there are not male doctors that understand this as well as female doctors who are ignorant of it. Both exist.
But it does mean that you may sometimes encounters sexist attitudes when it comes to issues like migraines. These attitudes can make it difficult to be taken seriously and receive the treatment you need whether you are female or not.
Needless to say, if you believe that this is happening to you, it is time to move on to a different healthcare provider.
5. Walk in knowing that many people imagine head pain is, well, imaginary. But we know it isn’t!
Another thing that I have noticed with headaches in particular is that for some reason, this form of chronic pain tends to be mistaken for an imaginary syndrome more than most.
I expect that there are two reasons for this. One of them is the fact that (like many other forms of chronic pain), migraines are invisible to the eye.
The other likely reason is the location of the pain being in the head. As shallow as it is, I do believe that many people really do believe that the pain in your head is “all in your head.”
Even though I suspect that almost everybody has had a headache at some point of their lives, those who do not suffer from chronic or intense head pain may have only experienced the mild, garden-variety of headaches.
They lack the empathy to truly appreciate what you’re going through. And because they look at you and you “look healthy,” they may simply not believe you.
Indeed, doctors, family members, and others who owe you some form of consideration for whatever reason may find it convenient to dismiss you. Doing so abdicates responsibility or discomfort with your situation.
The only ways to deal with this issue are 1-to get really good at communicating about your pain, as previously discussed, and 2-to be willing to move on if you are dealing with a truly unreasonable, un-empathetic person who is never going to get it.
6. Have palpable symptoms? Make your doctor feel them.
Even though headaches are invisible to the eye, they can leave detectable signs on the body. Many different types of head pain involve muscle tension. Obviously, this is the case with tension headaches. It is also true of cervicogenic headaches and many migraines.
The pain of the headache can be so overwhelming that the localized pain that you may have in your and shoulders and even your upper back can be masked by it. But if you check with your hands, you can often find muscles which are severely tight.
If your doctor does not believe that your pain is real, ask them to actually feel your tight muscles and make observations about your posture.
Physical therapists can usually spot maladaptations in posture right away. These types of doctors as well as massage therapist and chiropractors are adept at detecting when something in your body is wrong.
More generalized health practitioners usually are not as familiar with these signs, but being able to actually feel your tight muscles and observe the ways that your body has improperly adjusted to your pain, they may be more likely to believe you and do something about it.
In my case, for example, even on a good day, my trapezius is often slightly tight. On a bad day, it is ridiculous. So even when I’m feeling fine, a doctor can usually tell that I have musculoskeletal problems just by feeling my shoulder.
7. Keep a headache diary for the doctor, your insurance, and yourself.
Another very helpful step you can take if you want to make life easier when dealing with the healthcare system and headaches is to keep a log of your pain as well as treatments you have tried.
If necessary, update this log every day. It will help you in three distinct ways:
- You can show it to your doctor to make a point about your head pain. The more specific your observations are—especially if logical patterns have emerged from them—the more likely it is that your doctor will understand that your pain is a serious issue, and that you will also work hard to treat it.
- Maintaining a headache log can be critical when dealing with an insurance company. Sometimes, insurance companies will demand these types of logs in order to cover treatment. This is not likely with less expensive treatments, but with injections or other pricier treatments, maintaining records may be the only way to make your case.
- Finally, maintaining a log can go a long way toward helping you to treat your own head pain, both on your own and with the help of your doctor.
8. Do not complain about the pain. Simply make it clear that the pain is debilitating and that you are here to take action.
Another thing that I’ve learned from knowing people who work in healthcare is that doctors have varying levels of patience when it comes to dealing with people who are in pain.
There are healthcare practitioners who flat-out find it irritating. Of course, such practitioners may be a poor fit altogether. But you can keep issues with them to a minimum if you simply make statements about your pain rather than moaning and groaning about it.
This can be important to remember if you are dealing with someone other than your primary—for example, an urgent care worker. People who work in urgent care are often particularly overwhelmed with what they see as tedious, trivial health issues. This might give them a bias which could color their perception when they speak to you in a negative way.
In short, make it clear that you are here to get things done, not simply vent about your situation. If you are doing the latter, they are more likely to give you a referral to a psychologist than they are to help you minimize the pain.
9. Refuse to work with a doctor who doesn’t take your pain seriously. Second opinions are fine and normal.
While you do not have much choice over who you see in urgent care, you do have choices when it comes to your primary care provider as well as any specialists you are seeing.
It can be easy to persuade yourself otherwise if you are used to long wait times for appointments or if you live in a rural location with a smaller selection of healthcare practitioners.
But if you ever have the chance to work with a doctor who does take you and your pain seriously, you will see immediately how much time (and possibly money) you have wasted on those that do not.
The thing nobody wants to talk about is this. If you are in enough pain that you are reading articles about how to treat it and scheduling appointments to try and stop it, your pain is serious.
It is severe enough to be interfering with your life, at the very least. In some cases, it may be agonizing enough to bring your life to a halt.
If that is the case, you may already be fairly traumatized by your circumstances. Every person’s experience of pain is subjective and individual, but for me:
- My pain at peak severity becomes attention. I cannot focus on anything else. It devours everything.
- I cannot experience pleasure when a certain level of pain is present. I ate my food but I didn’t taste it. The sun rose each morning, but its light couldn’t touch me.
- My pain, in the beginning, was intractable. It wasn’t merely chronic. It was omnipresent. My body had become a cage.
- The trauma of this experience brought with it night terrors, sleepwalking, anxiety and despair. Despite all this, the average person who encountered me didn’t see an ounce of that agony in my eyes or hear it in my voice. I was able to robotically go through many of the motions of my life. So to them, it didn’t exist.
Whatever your personal experiences of pain are, the last thing you need for your physical or psychological health is to be told:
- “You’re imagining it.”
- “You’ll get used to it.”
- “You look fine, and you’re functioning. It can’t be that bad.”
- “It’s all in your head.”
- “You need to learn to live with it.”
- “Everybody has something. Other people have chronic pain and deal with it. So can you.”
- “You’re focusing on it too much.”
None of this is to say that psychosomatic factors cannot get involved in head pain, or that stress cannot make it worse.
But if there are physiological factors at play (and if you’re in debilitating pain, this is the most rational, obvious explanation), you cannot just wish it away or think it away.
As to “getting used to it,” people experience pain differently from each other. Some people are fine in pain. Others are not. The bottom line is that if you are suffering, you deserve treatment, not judgment.
I finally have a doctor who gives me that, and actually takes the time to listen to me (arguably the most important thing a doctor can do).
She also collaborates with me instead of talking down to me and simply throwing orders at me.
This is also essential when treating migraines or any other pain disorder, because for you, it is sometimes going to be a round-the-clock job. And while your doctor knows more about medicine than you, you know your own body better than anyone.
10. Doctors are on the lookout for drug addicts. Sometimes that makes it hard to spot real pain.
Something else you should know when dealing with healthcare providers if you have headaches is that many of them are paranoid about giving out painkiller prescriptions.
This paranoia is not at all unfounded. There is a literally an “opioid epidemic” these days, as reported by the US Department of Health and Human Services. Indeed, it has even been declared a public health emergency. More than 11 million people are believed to have misused prescription opioids.
So it is not uncommon, if you complain about pain without a clear, identifiable origin, for a healthcare provider to err on the side of “safe,” and assume that you are a drug addict looking for a fix.
The best way to circumnavigate this problem is by making sure that you do not walk in and immediately start requesting painkillers (which might be your first instinct, as it was mine).
Instead, focus more broadly on managing your migraines through a combination of home remedies, natural treatments, preventative supplements or medications, and acute pain killers.
If it is clear that you are well-researched on your own condition and that your priority is to end the pain through whatever practical means are available—drug-related or otherwise—it is far more likely that your doctor will not mistake you for a drug addict.
11. Do not work solely with mainstream healthcare professionals (but don’t rule them out).
Finally, one last tip for navigating the healthcare system with headaches is to not confine yourself to mainstream medicine.
Even though migraines are a neurological problem, they do not happen in a vacuum. They can lead to musculoskeletal complications, or be triggered by those issues.
Physical therapists, chiropractors and massage therapists can be very helpful dealing with these aspects.
In my experience, they also tend to be far more likely to empathize and take pain issues seriously.
A mainstream doctor who sits across from you in a room sees nothing wrong when they look at you.
But when a chiropractor feels your joints are out of alignment, or a physical therapist sees the way you are moving unnaturally to protect yourself, or a massage therapist feels the tight trigger points in your muscles, the pain can be very visible to them.
After not being taken seriously by multiple doctors and being accused by my family of “imagining” my pain issues, I will never forget the first time a medical professional—specifically a chiropractor—pressed at a muscle in my neck and said, “That re-produces the pain, doesn’t it?” And it did.
Conclusion: Navigating the Healthcare System With Migraines is a Challenge, So You Must Advocate For Yourself
When you are in pain and desperate for solutions, you can feel (literally) like you are banging your head against the wall trying to get through to doctors and wrestle with insurance companies.
The key to getting what you can out of the healthcare system without making your life worse is to confidently express your needs and be selective about whom you work with.
To sum up what we have discussed, here are my suggestions for headache sufferers based on long, hard experience:
- Try and grasp the psychology of doctors who are prone to ignoring you. If you sense that factors such as stoicism, sexism, ego, or irritation are standing in the way of a productive dialogue, strongly consider going with a new provider.
- Do not let a doctor tell you your pain is unimportant for any reason.
- Be aware that a reasonable doctor can easily mistake a valid plea for help for a drug addict’s plea for a quick fix. Avoid creating this perception.
- Get better at communicating about pain levels, and keep the focus on how your pain is limiting your life.
- Share palpable symptoms with doctors (i.e. tight muscles). Have them actually feel them.
- Don’t downplay your own pain through habitual stoicism or a flat affect or voice.
- Keep a headache diary for yourself, your doctors, and your insurance company.
- Consider seeing alternative healthcare practitioners along with your primary or pain specialist. They can provide you with additional perspectives and therapies, and tend to take pain issues seriously.
With these tips on your side, hopefully you can find the right provider and get the mainstream care you need for your migraines.
But if you get tired of dealing with doctors and/or you simply want to augment your treatment plan, don’t forget that there is a lot of research backing home remedies and herbal supplements for head pain.
So if you haven’t yet, think about giving butterbur, boswellia, feverfew and other migraine supplements a try. Also make use of ice, a healthy diet and workout schedule, and other home techniques to reduce the frequency and severity of headaches. Good luck!