Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
Advocating for health
Are you an advocate for health? If you have been diagnosed with a chronic condition, or you are suffering from an undiagnosed mystery illness, you are going to need to be. The fact is, no one cares about how badly you are doing or solving your medical mysteries as much as you do. That is not to say there won’t be people who are concerned, possibly even including your doctor, but none of them are in the position to fight for your health like you are. They are not in your body, they don’t know how it is behaving, or misbehaving. As a result, they won’t know what to do to help you. The only way they will find out is if you learn to effectively advocate for your own health and healing.
The first step to advocating for a chronic health condition is going to be stop ignoring symptoms. Chronic diseases come with chronic symptoms. Incredibly adaptable as we are, we truly can get used to just about anything. And chances are, if you’ve learned to live with it, you aren’t going to remember to mention it to your doctor. So, step one is stop ignoring your body. Listen to its complaints, notice the ways it doesn’t feel good, the ways you have changed your approach to activities because your body won’t do it the “normal” way anymore. Every little adaptation you have made will need to be examined.
The best way to get a good, clear picture of what is happening in your body is to keep a symptom journal. This can be as simple as a notebook, an app, or this printable symptom journal. Record your sleep patterns, pain level and location, and any other symptoms that come up. Track your mood and how rested you feel. Sleep that doesn’t leave you feeling rested can be a big clue for a medical professional. Recording your daily symptoms will allow you to find trends, to identify the things that are the most frequent, but also to catch the small things that are frequent but not constant. Before you meet with your doctor, take the time to go through that journal and jot down all the frequent symptoms and issues you have recorded, along with anything out of the ordinary. You may have a long list, that is okay, this is detective work, the more clues you can give the doctor, the better.
That said, be prepared for irritation when you bring a long list of issues, and don’t be afraid to let that be your cue to move on. If the doctor that you are seeing now does not seem to have the time for your issues, and brushes off your symptoms, get a new doctor. If your doctor will not order testing to rule out causes of your symptoms, get a new doctor. If they tell you it is all in your head, or suggest it is only depression, get a new doctor. You know your body. This can’t be stressed enough. If you know something is wrong, it is. You do not have to suffer in silence. Doctors are there to help you, if they aren’t find one that is. Having a doctor who hears you, orders testing to confirm or rule out diagnosis, and tries to help solve your medical mysteries will make all the difference in the success of your outcome. Lazy medicine will never get you where you need to be.
You do not have to suffer in silence.
When you find a doctor you feel you can trust to help you on this journey, the next and maybe most important step of all to effective health advocacy comes into play, Be Honest. Completely, entirely, candidly honest. If they are going to help you, they need the entire picture. Even the embarrassing and disgusting bits, sometimes especially the embarrassing and disgusting bits. Remember, you do not know which symptoms might be the key, the flag that says, hey check for this. So, share them all. Better to have an uncomfortable conversation than to suffer.
Speaking of suffering in silence, part of advocating for yourself with chronic disease that we haven’t touched on yet, being honest with your loved ones, workplace, and anyone who has expectations about your abilities. If they are accustomed to you doing things for them or with them, give them the courtesy of being honest about any limits you’re finding you need to honor. Don’t just suck it up and push through in silence. I did this for so many years. Years in which I could have had help and understanding. Suffering in silence also leads to misunderstanding and hurt feelings. After all, if they don’t know you are battling fatigue, or your knees have been killing you for weeks, canceling that plan to hike or that night out might feel personal. Be honest about your health struggles. Not a broken record, but honest. They won’t see your pain or the limits it creates for you if you don’t point them out. So, speak up.
Back at the doctor’s office, you’ve got a doctor you can trust, they help you identify the causes, advocacy done right? Wrong! If the disease is chronic, you will never be done advocating for what you need. Sorry, but that is the truth, buckle in, you’re in this for the long haul, and you are going to have to be at the wheel. No riding shotgun staring out the window while the doctor does all the work. For one thing, that won’t work, without good feedback from you, your doctor cannot know how well prescribed treatments are working.
Remember that symptom journal? Keep writing in it! Add tracking medications, side effects, activities that help, any exercises or other nonprescription remedies you are using. If you find that something is not working, or it is causing another problem, discuss it with your doctor. Rarely are treatments one size fits all. What works for some might not work for you, and in most cases, there are going to be many options for treatment. Through trial and error, if you speak up and are honest about effectiveness, you can find the one that works for you. If you don’t self-advocate, you may cause more health issues while suffering, for no reason. You won’t know if another option might be better for you unless you try. So, speak up, be honest, and ask for what you need.
How are you going to know what you need? Unless your doctor is above and beyond the norm, waiting for them to give you the magical treatment option might not work out. It’s time to consider the last important aspect of self-advocacy, education. Once you have a diagnosis, it’s going to be your job to become an expert on it. Even if you have a specialist handing your disease. The more you know, the better prepared you will be. Being prepared means you will be more likely to ask the right questions and discuss the things that particular doctor can assist you with. It can also help you to root out other hidden medical issues. If you have a symptom you thought was your chronic disease, but none of the literature mentions it, it may well be something else happening.
Researching your condition may also allow you to identify management strategies you are not likely to hear from your specialist. Many doctors tend to lean heavily on pharmaceutical or surgical interventions when lifestyle changes could be just as effective. Even when the best treatment is medication, there are often many other things you can be doing to help manage symptoms and reduce disease activity. Things you may never hear about if you stick to only doing what your doctor comes up with. Working as a part of the team, gives you better odds of success.
If you listen to your body, educate yourself about your condition(s), and develop an honest partnership with a good medical team, chronic illness is much more manageable. Keeping a symptom journal, paying attention to how treatments are working, and speaking up when they are not, will make you an effective advocate for health. Self-advocacy leads to healing! Don’t wait, Self-advocate!
Tenacious ME 