and each medical system is different, so this is a tough topic—especially if you have transitioned from one system to another because of a relocation or financial change. But it is extremely important to know your rights as a patient, under the law, wherever you are. The law and medical governing bodies will set out a wide range of influencing factors in your health care, including: data protection, privacy, complaint procedures, extent of financial coverage, extent of financial liability, doctors’ required qualifications, medical practice insurance requirements, your medical insurance requirements, access to care (both primary and ongoing), and a million other things. Your ability to pay, ask for a referral or a new doctor, lodge a complaint, see your own records, or pursue alternative treatment avenues will all depend on your particular medical system. So research it. Know your rights—it will put you in a much stronger position when discussing your health care with your providers.
Exercise: Making Notes for Your Doctor’s Appointment
Making notes for a medical appointment is an important skill. Before your next discussion with your doctor, try the following:
1.Write down, in any format you like, everything you wish to discuss.
2.Under each topic, list the symptoms you are concerned about.
3.Under each symptom, write as much detail as you can about it. Include medications, treatments, and any other factors (lifestyle and otherwise) that you think may be affecting it.
4.Under that, write down how this symptom affects your day and give it a seriousness rating from one to ten.
5.Finally, read back through your notes. Are they clear? If not, try organizing them. Have a planned order in mind to frame your upcoming discussion, and set out your notes in that order.
6.List your questions at the end.
7.Consider typing up brief, bullet-pointed notes to give to your doctor during your appointment—this may save time for you both and will give them something to reference.
Example
| Symptom 1 | Symptom 2 | Symptom 3 | Symptom 4 |
| Any meds used | Any meds used | Any meds used | Any meds used |
| Any treatments | Any treatments | Any treatments | Any treatments |
| Factors affecting this | Factors affecting this | Factors affecting this | Factors affecting this |
| Seriousness 1–10 | Seriousness 1–10 | Seriousness 1–10 | Seriousness 1–10 |
| Description of its effect | Description of its effect | Description of its effect | Description of its effect |
Question 1:
Question 2:
Question 3:
A small note about pain as it relates to some basic aspects of you: firstly, age. It is a well-known fact that, as we age, our bodies deteriorate, and once-simple tasks may become painful or even unachievable. That is a normal and expected part of life. However, the rate at which we deteriorate can vary widely, and, for those of us who have chronic health problems from a young age, the process starts earlier and can proceed more swiftly than average.
While many aspects of pain management apply to the expected symptoms of aging—such as arthritis—there is an aspect of pain management that the young have to perform, that the elderly do not. The fetishism of youth (a.k.a. health) makes it much, much harder for younger sufferers of chronic pain to live openly managing their pain. There is an awful phrase that I’m sure many, many of you have heard: “Well, you look fine.” Ah, of course. I look fine, therefore I must be fine. I am only twenty, or thirty, or forty, so by your standards there really can’t be anything much wrong with me. I must be exaggerating. I must be lazy, or a hypochondriac. There are no physical symptoms like a cast on my leg, and I am not eighty and therefore immune from your judgment about my health, ergo everything is well. This is, sadly, an opinion that even some doctors profess—if they can’t find anything wrong with you on first examination, then there is nothing wrong. Pull yourself together. Only the elderly experience physical deterioration.
Sadly, younger sufferers of pain do not experience camaraderie with others—friends in a similar physical state—or shared understanding of the world at large. It would be patently wrong to hurry along an elderly person in front of you on the sidewalk, but doing this to a younger person is socially acceptable. And complaining about a sore hip may be normal for a seventy-year-old, but being twenty and doing this makes you a whiner. No, it’s not fair.
It’s easy to look at those attitudes in the abstract and know they are wrong, know that those judgmental people don’t know you, don’t know that you are doing the best you can. But knowing that and feeling that way in the face of bemused stares and probing questions are two very different things. We will talk later about shoulding and its negative effects. There is a very difficult, specific part of shoulding that happens only to the young, and it is all-encompassing: you should be healthy. The fundamental belief that ill-health only comes with age is a pernicious and dangerous one and leads many people to ignore or try to tough their way through pain, without ever understanding the cause or becoming able to make it better. Again, knowing that someone is doing this to you is a very different thing from being able to say so, or being able to recognize it in the moment. More often than not, even for the most rational and self-assured people out there, the exclamation “You look fine!” will make you want to prove it, to live up to that, to agree and minimize and stop putting your pain management first. There is no amount of life experience that can stop this from happening, but you can stop it from affecting how you manage your health. Shame is a natural result of someone trying to shame you, but don’t let it change the way you have decided, rationally and calmly and with your doctor, to act. Someone else’s judgment is not more important than your need to manage yourself.
A similar point exists for gender and pain. Socially, there is an understanding that “men are tougher,” “real men don’t cry,” and other similarly asinine expectations that can make living in pain, openly, very difficult for men. Why don’t you just man up? Tough your way through it? Real men don’t let pain stop them. This is such obvious nonsense in the abstract that it’s hard to even write down, but it’s a very real aspect of many chronic pain sufferers’ lives that can make seeking treatment, accepting help, or even discussing their bodies with loved ones much harder. And, as with age, there is not really a way to stop this happening, to prevent society at large from putting these expectations on you. All you can do is make sure you are taking thoughtful care of yourself, follow your doctor’s advice, speak up when you feel able to challenge the nonsense, and ignore it when you don’t. Remember, your body is more important than other people’s expectations.
A Note on Exhaustion
A hidden but significant aspect of living with pain is exhaustion. This comes in several forms, the simplest of which is the basic feeling of being physically and mentally tired from just existing. Getting through each day takes a toll, being in pain is hard, and many people are understandably dog at the end of it. Your overall energy is lower when you experience pain, and this is true for everyone, regardless of age or gender.
Sleep is a separate but also very important issue for chronic pain sufferers. Getting quality sleep is much harder when in pain, when battling the side effects of medications, and when anxious about health. The normal consequences of living with pain lead
