Sick (14 page)

Dealing with a serious medical condition can be overwhelming. In trying to manage your health and wellness, you have to process information that comes at you from various directions and make major decisions about your health and care. Few of us have even thought about ever being in this position and fewer still have models for how to do so.

In the following, I have noted some things I found particularly helpful in being a “patient” (i.e. the aspect of illness that involves dealing with doctors). In my case, I've mostly dealt with cancer doctors, but I've also tried to incorporate perspectives from people who are dealing with other serious health conditions. This is by no means exhaustive or applicable to all situations, so please take the suggestions that are helpful and disregard the rest.

One of the most important parts of being a patient is remembering to be understanding and kind to yourself. Dealing with a serious health condition is difficult in so many ways. There are plenty of good things that come out of dealing with doctors, but also lots of things that can be, well, less than pleasant. Remember that you are not the first person to feel frustrated by the process. Be patient with yourself and give yourself credit for every step you take!

If you're newly diagnosed, you will probably need to find a doctor who is going to treat you (who in many cases may be different from the one who diagnosed you). The extent to which you have a choice about this can be limited by resources, insurance, finances, and time, but if you have the means, try to find the person in whose hands you are going to feel the most comfortable. Some people find it helpful to approach this as if they are “hiring” a doctor who is the best person for the job (this might be a difficult analogy for radicals with an aversion to being a boss!) This could mean the person who is known as the “expert” in the field or the person who was recommended by someone you trust or some combination of factors, but the important thing is to try to find the person who you are most comfortable receiving care from.

This may involve seeking out a second or even third opinion. Again, the extent to which you can do this may be limited. Even if you have insurance and it allows for this, it is not always easy: finding a second opinion can involve jumping through hoops to figure out who to see, clearing each step with your insurance, accessing
your medical records, making sure the new doctor/hospital has all the information that they need for the appointment, and potentially travelling out of your area for the appointment. But another opinion can change the trajectory of your care and put you in hands you feel more comfortable with.

Dealing with an illness typically means having a lot of doctor appointments. It can be really useful to keep a single notepad to write down all of the important information that you receive as well as a single binder or folder to keep track of all of your important documents. This way, all of your relevant information can stay in one place.

A notebook is particularly helpful in doctor's appointments. In high stress situations where you are dealing with lots of new information, your ability to process information and remember it can be hindered, so writing down important information can be critical.

It can also be really useful to go over your notes after an appointment. I have sometimes found that I thought I understood what a doctor told me during an appointment but in going over my notes or explaining what was said to someone else, I realized that I had questions that did not hit me during the appointment.

I also found it really useful to keep a running list of questions that would come up in between appointments. Of course, there were some questions that could not wait and for those I had to call the doctor. But for a lot of others, I could wait until the next appointment and wouldn't always remember them unless I wrote them down.

I strongly recommend bringing someone into appointments with you. Ideally, this would be the same person each time so that you have at least one person who is always keeping track of the same information that you are. When I was first diagnosed, my parents (who were separated but both lived nearby) insisted on coming with me to my appointments. I was REALLY resistant to this idea. I think that going on my own made me feel like I had control over what was happening and that the situation was something I could handle. In retrospect, I am extremely thankful that I got over this. I found that, particularly in the beginning, when the doctor went over results and recommendations, it felt like watching a movie in fast forward. I tried to understand and catch what I could, but the information inevitably came out in a way that became hard for me to always process, never mind catch the minutia of. Having at least one other person in the room to hear this information and to ask questions was extremely useful. It also became really important for us to talk after the appointment. I was amazed how often one of us had understood something the doctor said slightly differently than the other. Being able to clarify points and come up with additional questions was very useful in ensuring that I fully understood what was happening with my health and treatment.

If you do not have someone to come with you, you may want to bring a tape recorder into appointments with you. This way, you have a record of what the doctor said and can easily clarify any questions.

As we all know, doctors can be difficult to deal with. Experiences can vary vastly with different doctors, but quite often, patients are kept waiting past appointment times, doctors can speak at a level that is difficult to understand, patients can be made to feel like they are taking up the doctor's precious time if they ask questions, etc. Do not be afraid to ask doctors all the questions that you have before leaving your appointment or to ask them to rephrase things so that you are sure you know what they are saying. Also, try not to be shy about your feelings and apprehensions when talking with your doctor; your doctor should know what you're thinking.

When discussing treatment options, do not be afraid to ask what options might be possible other than the one the doctor is recommending (if this is information you want to know). Also, if you are unsure about what option to pursue, see if it would be possible to call the doctor the next day to make a decision (if time allows), rather than being pressured into the decision during the appointment.

You may find it helpful to do research about your condition on your own. I would have thought that doctors and hospitals would have provided me with significant information about my condition and what was going to happen, along with recommendations for reading more on my own, but it was actually the opposite. They really only told me what they felt I needed to know (which was generally a bare minimum). But doing research on your own can be tricky. After being diagnosed, one of the first things I came across in trying to do research was a list of people who had died from the type of cancer that I had. I decided right then to hold off on any additional research. Over time, it became easier to read more about my condition, but especially in the beginning, I really relied mostly on what doctors said. Of course, it is important to be well informed, but there may be limits to the information you want to expose yourself to. If you find it difficult to do research on your own but are interested in learning more than what the doctor is telling you, you may want to ask someone you trust to do research for you. This person can filter out the misleading, frightening, and bizarre stuff you can come across and only pass along the information that is useful.

One last word about dealing with doctors: some people feel the need to research all aspects of their conditions and are never afraid to question doctors about what they find. Others do not have any desire to learn more than what their doctor is telling them and need to put their faith in their doctor's hands in order to get through their situation. Neither approach is better than the other. You can only do what you feel you are capable of and however you choose to handle your
illness and treatment in order to get yourself through it is the right way.

Of course, there are lots of other aspects of getting through these experiences that do not involve doctors. I am just going to touch on a few suggestions below:

Consider keeping a journal. This can give you a space to express yourself in a way that you may not be able to (or may not want to) with others. It can be really cathartic in dealing with all of the mess involved in having an illness. You may also find it useful to try certain exercises during tougher times like the one mentioned in the zine,
Support:
“write down everything you can think of that is beautiful, that makes you feel alive, or that you simply
like.”

Consider seeing a therapist. Most people don't talk enough about the emotional side of dealing with illness, but this can be just as hard, if not harder, than the physical. Therapy can be really helpful.

One last suggestion: don't be afraid of indulgence. If you're battling a serious health condition, don't be afraid to treat yourself every once in a while (or more than that!). You deserve it. Indulgence can take many forms from buying yourself a record you've always wanted to finally ridding yourself of the negative, energy-sucking vampires in your life. Maybe even consider making a list of all of the things that you want to do and still can do and do them!

Though dealing with illness will always be tough, it is possible to maintain a semblance of control and even to feel empowered in navigating through the world of doctors and medicine. Remember to recognize all of the steps you take in living your life while dealing with illness. Appreciate your own efforts, give yourself kudos, and love yourself for being so brave.

Emiko Badillo
was born in 1975 to a Mexican dad and a Japanese mom. Being sick is the cherry on top of the crazy sundae that is her life. With the support of great friends, parents, brothers, and her husband, Chad, and dog, Ago, she continues to live and have fun.

Joe Biel
is a videomaker, author, zinester, tea drinker, publisher, bicycle mechanic, electrician, organizer, patch sewer, and recently converted cell phone user. He is currently working on a book of interviews for Garrett County Press with old punks who pursued things other than music. He doesn't know where he lives.

Krista Ciminera
lives and works in Brooklyn, NY. Half of her time is spent riding her bike, and the other half is spent as a feminist activist in the For The Birds Collective, playing guitar in Zombie Dogs, and learning as much as she can.

Lauren Denitzio
is an illustrator and graphic designer living in Brooklyn, currently self-employed and playing in the band The Measure [sa]. She grew up in New Jersey and was diagnosed with Marfan Syndrome, a connective tissue disorder, as a young child. She is a member of the For The Birds feminist collective and distro and enjoys writing music and drawing. She is interested in talking to more people about similar illnesses and can be reached at lauren.
[email protected]
.

Mandy Earley
is an editorial associate working in academic publishing in Durham, NC. She loves reading and writing about radical politics, consumer culture, medicine, and health care. More of her writing can be found on her blog LOVE/SICKNESS:
http://radicalrx.blogspot.com
. Feel free to write Mandy at
[email protected]
if you'd like to discuss the topics presented here, on the blog, or any other aspects of sick life.

ema
has a strong midwestern heart and a love of tiny things and insects. Appreciation often overwhelms her, in a good way. She dislikes illness but likes what we can learn from it. She wishes for a world where people always are good to each other and where there are no prisons.

Erica
lives in Durham, NC and goes to UNC Chapel Hill for social work. She was diagnosed with Crohn's colitis (an autoimmune disease of the colon) when she was 16. Aside from paying medical bills and fighting with insurance companies, Erica likes to sing, play her trombone and kazoo, and be crafty with paper and fabric. Her favorite color is green.

Ben Holtzman
's work has appeared in
Clamor Magazine, Journal of Popular Music Studies, Left History, Maximumrocknroll, Popular Music and Society, Radical Society
and the collections
Constituent Imagination
(AK Press) and
In The Middle of a Whirlwind
(JOAAP). He has wanted to do a zine since
Maximumrocknroll
first made his fingers black at age twelve, but never would have guessed it'd be on this topic. Be in touch with him through:
[email protected]

Sarah Hughes
is a New York City Public School teacher and ABA Therapist, originally from Austin, Texas. Hughes is a proud member of the Park Slope Food Cooperative, Teachers Unite and is an avid crafter. This is Hughes's first zine contribution, and she can be reached at:
[email protected]