Please note: This is a sneak peek of Bipolar Rules! — that means it’s a draft. This is not the final version.
When you have bipolar disorder, advocating for your health is critical and yet harder than it would be for the average person. Doctors are often to blame for this difficulty. Not all doctors are the same, of course, but many treat people with serious mental illness in ways different from other patients. This is unfair and puts additional roadblocks in front of people who can handle them the least.
Some doctors don’t believe in patients of any stripe advocating for their health. I’m not sure why this is, but it’s pretty common for a person to see a doctor about a complaint and the doctor to tell them it’s “all in their head.” This happens to women and minorities more often than others, and for people with bipolar disorder, it gets so much worse.
People with bipolar disorder are often assumed to be lying or making things up. They are often assumed to be drug-seeking. They may also be assumed to be attention-seeking or hypochondriacal. In other words, the second you sit in front of a doctor as a person with bipolar disorder, they may be inclined not to believe a word coming out of your mouth. The doctor may treat you like you’re “crazy,” whether they know they are doing it or not. Your self-advocacy may be seen as an annoyance.
But let’s say you get past that problem, and the doctor believes you when you talk about your health concerns. That’s great, right? Well, it might be. But then again, you might run into the second big problem: Doctors who blame every concern on bipolar disorder.
One of the problems with bipolar disorder is that it can have many psychological and physiological effects. I suspect we can’t even pinpoint every effect with our knowledge at this time. This being the case, doctors are prone to attributing all ills to bipolar disorder or to bipolar medication side effects. And while sometimes this makes sense, other times people genuinely have other problems that also need taking care of – and unfortunately, doctors are often blind to this.
Moreover, people with bipolar disorder are battling a possibly lethal illness. This often makes us very, very tired. Bipolar disorder can hinder us cognitively as well. We don’t have the same internal resources to deal with the built-in challenges that exist within the doctor-patient relationship, let alone deal with the added difficulties of being perceived as “crazy” or “difficult” because of a brain disorder that we don’t want and didn’t ask for. In short, we are less capable of dealing with these multi-faceted situations because of all that we are dealing with and yet are more required to deal with them because of the complexities inherent in having a serious mental illness.
How to Advocate for Your Health
But you shouldn’t give up. None of this means you’re actually “crazy.” None of this means a health complaint is “all in your ahead.” None of this means your health concern should be ignored. What this means is that there are systemic issues in medicine that can cause you difficulty.
Whether you are seeing a doctor because of a lump under your arm, a scratchy throat, or a medication side effect, you need to know how to advocate for yourself successfully.
Remember these things:
- You are not crazy. While it’s possible that a health concern is in your head (it can happen), consider the evidence. What other conditions may account for your concern? Have they been ruled out?
- You are the expert on you, not the doctor. If something doesn’t feel right inside you, it very likely isn’t.
- You deserve to be treated with the same respect, dignity, and trust as any other patient. It is not okay to write your concern off because of a mental illness diagnosis.
- You deserve to be taken as seriously as anyone else and you deserve to have the same energy spend on your concern as anyone else. This may mean extra tests, referrals, etc., to get to the bottom of your concern.
- You deserve an explanation for your concern that fits the facts in your case.
When you’re sitting in front of a doctor advocating for your health, try these things:
- Do your research beforehand. This doesn’t mean diagnosing yourself. This means finding out what might be causing your concern so you can have a conversation about it.
- Make a plan before you see a doctor. Write down all your concerns, symptoms, questions etc. Write down what you need to know. Write down your goal(s) for the appointment and what you don’t want to leave without.
- Stay calm and refer to your notes. You’ll look organized and, indeed, not “crazy.”
- Give as much detail with as many examples as you can. For example, saying, “I feel arm pain all the time,” is not very helpful. Saying, “My elbow hurts 90 percent of the time, and it’s particularly sore after showers,” is much better.
- If a doctor isn’t taking you seriously, state openly what you feel is happening and what you need. For example, “I may not be speaking very clearly. The pain is intense and keeps me awake at night, so I need a way to sleep.” (You might have actually been very clear, but falling on your sword a little can help the conversation move along.)
- Ask lots of questions and try to understand what your doctor is thinking. They may have good reasons for why they’re acting a certain way, but they aren’t communicating them to you effectively.
- Ask for or even demand a treatment plan. That plan might include tests, a referral to someone else, or another appointment. Anything is okay. Nothing is not okay.
- Bring a person with you to your appointment. Someone assertive who backs up your concerns and doesn’t have bipolar disorder may be someone to whom the doctor will listen. (Yes, this is unfair.)
- Force the doctor to document everything. For example, if they deny you a test you believe you need, make them write that in your chart. If a doctor is forced to document something, they often suddenly become more reasonable. (They likely don’t want to be liable in the event of a mistake.)
- If none of this works and the doctor still isn’t giving you what you need, get a referral to someone else. This is a last resort because it can be hard to find another doctor in some cases.
In short, try to work within the system as best as you can, even if that means compensating for a doctor’s prejudice. I know that’s not fair, but confronting a doctor’s prejudice is likely to make your relationship worse and unlikely to get you what you need. If you don’t have to continue the relationship with the doctor and you want to say something about inadequate treatment, then fine, but otherwise, I would keep charges of prejudice to yourself – for your own sake. And finally, remember that advocating for your health is good – it’s what you should be doing. Some awful doctors make it harder, but it’s still one of the most important things you’ll ever do. After all, if you haven’t got your health, you haven’t got anything.
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