Posted by Unfortunately, when you are chronically ill, you can’t just be the patient. You have to be the patient, the doctor, and the advocate. Now, I don’t mean you have to literally be the doctor, but you do need a sophisticated enough knowledge of your condition, the co-morbidities, and the side effects of your medications to properly advocate for yourself as the patient. This can be one of the hardest adjustments to make after being diagnosed with a chronic illness.
As a healthy, able-bodied person, I had always expected the doctors to recognize when something is wrong, and to leave with a diagnosis and a treatment. Have a weird rash on your arm? Get it looked at, get diagnosed with allergies, and apply the cream twice a day. Easy. Simple. Hassle-free. When you have a more complex or chronic condition that cannot be cured, this is often not the case. It usually takes multiple doctor’s visits along with a variety of different tests before any diagnosis is even discussed. If you are not used to being active in your medical care other than yearly checkups, this can be a huge adjustment. So, what does patient advocacy look like when you are chronically or invisibly ill?
Keeping track of your symptoms and medications
This is vital when you are chronically ill, and it may seem trivial! But when your symptoms are changing rapidly, and multiple different bodily systems are being impacted, keeping track of which days your stomach was hurting vs. which days you were having trouble breathing and the severity of both can become too much to manage without writing down. With a medical journal, when you go to the doctor’s office, you are more empowered to tell them exactly what you have been experiencing since you were last there. I learned the hard way after 6 years that keeping a journal is necessary.
Medications can also be extremely overwhelming for chronically ill people to manage. When you may have over 10 different prescriptions, along with even more supplements, keeping enough in your medicine cabinet so that you never have to skip a day is surprisingly difficult. One strategy that has helped me to remember all my meds is organizing my pills for the week every Sunday. I make a note in the same journal that I use to keep track of my symptoms of any prescriptions or supplements that I am running out of, how many days I have left of said medication, and by which day I will need to pick up more of them. This way, I only have to think about it once a week and I will see the reminder to get new meds each day as I log my symptoms!
Telling your doctor when treatment doesn’t work or when you think they are wrong
No one knows your body the way that you do. How it feels on good days, how it feels when your disease is flaring up, or how it feels after starting a new medication. Working off the assumption that a doctor will always know what is best for you can be dangerous; sometimes doctors get it wrong, and sometimes the treatment you are on doesn’t work like it should– especially with complex conditions for which there is no cure! Telling a doctor when you think something isn’t working is extremely difficult, especially for people who may be more introverted, anxiety-prone, or just, in general, a person who doesn’t like to question someone with a depth of knowledge on a topic (such as specialists). But it is necessary to follow your intuition and listen to your body when something feels wrong. Here are some phrases that I think it is important to get comfortable saying to your health care providers:
“I don’t feel like the cause of symptoms XYZ is being addressed. Could we investigate some other pathways to try and resolve this?” If you have some thoughts on what the cause could be, you can also try,
“I am concerned that these symptoms are being caused by condition ABC, are there any tests we can do to confirm or rule that out?”
“I feel like this medication has been making me feel worse as I have developed XYZ side effects and the original symptoms are still occurring. I’d like to try another available treatment.” This only works if there is an alternate treatment. But, finding the right medication can be years of trial and error, so speaking up for yourself when something isn’t right for you is crucial.
“My quality of life is being severely impacted by these symptoms and I am worried that something is going undiagnosed and therefore untreated, can you run some additional tests or refer me to a specialist who can treat a condition that you think could be related to these symptoms?” Sometimes you have to be very blunt that you are suffering and aren’t getting the help that you need. Telling your doctor directly how you are being impacted and what a more productive treatment plan would look like to you an efficient way to communicate your needs with your provider.
Researching your condition, treatments, and the co-morbidities
There is a running joke among people with general health anxiety that is along the lines of googling the cause of a headache and coming away from the search engine with a brain tumor diagnosis. But googling your symptoms is necessary when you are chronically ill. Not that anyone should go into their appointment and immediately tell the doctor, “I know that I have condition XYZ because google told me!” But, realistically, you only have about half an hour with your doctor– and appointments can take months to get. Therefore, diagnosing entirely new conditions or diseases in a single visit can be next to impossible. Leading to a longer duration of your symptoms and escalation of your condition before any relief is in sight. Presenting your doctor with a clear list of the symptoms that you have been experiencing, how they relate to the condition you think you may have, and asking for their opinion is a completely valid, and sometimes necessary, approach to take during your appointments. Especially if the illness you have tends to present with secondary illnesses (co-morbidities). Knowing that long-term steroid treatment can cause adrenal insufficiency in some people, or that hypothyroidism occurs in 4% of lupus patients empowers you to advocate for the tests that you need to treat symptoms that may be occurring because of a different condition. Knowledge is power when it comes to being chronically ill!
Making sure your test results get to where they need to go
This has always seemed harder to me than it needs to me. For some reason, when doctor’s offices are communicating with pathology labs, imaging centers, and other doctor’s offices, files always seem to get lost. I once waited three weeks for the results of a CT scan only to find out that the doctor’s office never received the results. The imaging center sent out the results the day of the test but the doctor’s office lost the fax. Wading through the medical and administrative tapes of transferring records while the results may have an impact on your quality of life is– to say the least– frustrating. Calling testing centers and the doctor’s offices that are supposed to receive the results within 72 hours of testing to confirm or check in with the staff there about the status of the results helps to prevent this frustration and potential delay in your treatment. This is usually something I write down in my journal as well– it keeps me accountable to myself!
Fighting for appointments and for insurance to cover your medication
This is another self-advocacy skill that can be difficult for an introvert because it usually involves continuing to ask for what you need even when people say no or try to redirect you to dead-end paths. Because, when your symptoms are flaring up and you need to see a new specialist so they can diagnose a new condition but the next available appointment is 6 months from now, waiting that long can be genuinely dangerous. The same goes for waiting for insurance to approve a medication you need. When you take multiple medications of all different price ranges, insurance companies will look for any reason to deny coverage; from claiming that you need to try other (usually less expensive) medications first to prove that you need the more expensive treatment to claim that you simply don’t need it, as a chronically ill person, it is important to learn that to continue to fight for your needs from an unfair health system.
Self-advocacy in a medical setting is a difficult skill to learn. It requires adapting to your specific specialist’s styles, constantly speaking up for your needs when they aren’t met, researching a variety of complex conditions, and practicing daily self-reflective rituals that feel tedious and repetitious. Like most skills, it takes a lot of practice and consistent effort– and, it is something that I am actively learning to do every day.
Erica Littman 