The Art of Being a Headache Disorder Patient

Nobody studies or practices how to be a patient, but when you are diagnosed with Migraine or any other headache disorder, being a patient becomes part of your identity. You can’t hide from it, but there are things that you can do to maintain perspective and not let your headache or Migraine control you as you strive to gain control over them. Keep the following principles in mind, and the experience can be treated as part of your growth and development – even if it’s not a lot of fun.

1. Don’t let your headache or Migraine be the central part of your self-definition. Think of the various rules that you play in life. You may be a spouse, parent, friend, and member (or former member) of a specific career group. You may also be a sports enthusiast, a lover of art, a reader, a gardener, or movie fan. You may also be a headache patient, but remember that isn’t all that you are.
2. Always plan and look forward to doing things despite your limitations. If your headache or Migraine becomes too severe to follow through with your plans, you can always change them – but don’t let inactivity be the default. There is a great difference psychologically between expecting to be active and expecting to be sick. If you have nothing planned, you will probably do nothing with your time even if you are feeling pretty good. You may then be tempted to fill that void with overthinking – about your pain and the unfairness of your condition, and you know that’s not a fun thing to be doing.
3. Get excited about the task of figuring out new activities that you can do despite your limitations. Make it a challenge, and then take pride in your accomplishments. If you are working, think of ways to make yourself efficient despite your pain. If you are retired or disabled, look to the internet, books, and classes where you can develop interests without spending a lot of money doing so. The internet also offers opportunities to get involved with others who share your interests. Volunteering can be a rewarding way of using your skills and background on a schedule that may be able to be accommodating to your headache. Also, volunteering for activities that help others can take your mind off your pain and enable you to feel less like a patient.
4. Never stop asking, “What can go right?” Time is on every patient’s side. New medical breakthroughs are occurring all the time. Stay alert to new discoveries in the headache disorders field. When you hear of something new, ask your doctor whether you are a candidate for a new medication or procedure or non-pharmacological treatment. Be an active partner in your own care.
5. Guard against low frustration tolerance. Your body may not be on the same timetable as your mind. Improvement may not be happening fast enough for you, and it certainly is reasonable to question your physician about your progress and expectations regarding your course of recovery. At the same time, it is important to recognize that headache disorder is a complex biochemical disorder. Everybody’s biochemistry is different, and if you are a chronic headache or Migraine patient, you have already demonstrated that treatments that work for most people don’t work for you. One of the advantages of not making the headache or Migraine too central is that you have other things to think about while you and your doctor are working toward improved pain control.
6. When you start feeling better, it is best to ease back to normal activities. Don’t go from nothing to everything – or you risk having a setback. If your headache or Migraine is controlled, you don’t have to accomplish everything today because there are more good days ahead of you.
7. Be an advocate for yourself. The Alliance for Headache Disorders Advocacy (AHDA) wants your help and participation. Getting a note off to a congressman or senator is a good example of being active and helping yourself and others. The AHDA will contact you when your message will be most politically effective. If you have not signed up, please do so at www.allianceforheadacheadvocacy.org.

I have observed that patients who have an active orientation and who stay positive tend to have good things happen to them. It’s not a guarantee but it is a good strategy for coping – and it beats feeling depressed any day of the week.

Ronald S. Kaiser, Ph.D.
Jefferson Headache Center; Philadelphia, Pennyslvania

Comments

[Martha Gaie, PhD, RN]

Is the author of this document a migraine sufferer? It appears that this is the professional opinion of Dr. Kaiser, not the voice of experience. As a health communication researcher, I understand and support the core message. However, as a chronic migraineur, this comes off as condescending and lacking credibility. No one should be talking about the "art" of being a migraine patient but a migraine patient. And I agree with what you're saying! But in the literature there is a heavy focus on what's wrong psychologically with migraineurs, an overemphasis on personality disorders, and a history of clinicians dismissing our pain. (Now we find that emotions and pain are both processed in the anterior cingulate cortex and that perhaps there's crosstalk or perhaps dual activation. Could it be the patients have emotions activated by pain rather than the other way around?) It wasn't that long ago that a headache textbook said migraineurs are victims of "errors in living." How would you feel if you were a cancer patient being instructed in the "Art of Being a Cancer Patient" by a non-patient? The source is the problem here, not the message. And if Dr. Kaiser himself is a migraineur, that would reduce my objections quite a bit.

[Ronald S. Kaiser, Ph.D]

It is always nice to know that a blog posting is being read. I appreciate Dr. Gale’s feedback even though I disagree with some of it.

It appears that much of Dr. Gale’s opposition to my blog is based upon the fact that she considers my opinions to be invalid even though her response contains the following statements: “I understand and support the core message,” and “I agree with what you are saying.” The objection is rather based upon the opinion that I have no right to say it since I am not a migraineur – a “charge” that she makes without a shred of evidence. In these days of evidence-based practice, I find it somewhat disconcerting that a health communication researcher would go in that direction. If a migraineur encouraged patients to take daily narcotics, would that make the recommendation valid because s/he knows what it feels like to be in pain?

I understand that there is a school of thinking that suggests that only physicians who are also migraineurs can treat headache patients, only doctors who have had cancer can treat cancer patients, only female physicians can treat women, only African-American doctors can treat African-American patients, etc. While this opinion has a substantial amount of support in the addictions community, it does not represent the accepted standard with respect to much of health care. I obviously find myself in the camp that believes that clinical effectiveness is what counts. My approach to the art of being a patient comes from a half century of work as a psychologist. Not only have I found these ideas to be accepted and helpful for thousands of patients, but I have vetted this list of suggestions (in a modified form) with a broad range of patients including those with heart disease, cancer, diseases associated with aging, brain injury, and especially headache patients. Never once has a patient accused me of disrespecting them by encouraging them to stand up to their disorder and be as active as possible and to advocate for their fellow patients.

In addition to not fully comprehending the purpose of responding in a negative way to a blog that has an unobjectionable core message, I am also perplexed by the question of whether I would instruct someone in the art of being a cancer patient – asked as if the answer is a foregone conclusion. My answer is, Absolutely! I would and I have. To do anything other than providing encouragement and guidance about how to stand up to and actively deal with the disease, rather than giving into it would be disrespectful to the large numbers of patients, physicians, and researchers who have made substantially progress and given hope to the current generation of cancer patients. Migraine also needs those kinds of role models, and I make no apologies for my efforts in promoting this (whether or not I have migraine – which is irrelevant).

RK