The dictionary defines an advocate as “a person who speaks or writes in support or defense of a person or cause; a person who pleads for or on behalf of another; an intercessor.” When you have chronically ill loved ones in your life, chances are great that there will come a time when they will need you to advocate for them. Being chronically ill is exhausting and it simply takes too much energy for them to fight all the battles that have to be fought. Maybe you are new to this chronic illness game. Maybe you have been in the game for a while, but your loved one is just now getting to the place where they no longer have the energy to fight their medical battles. Maybe there are many unknowns about your loved one’s illness and you see that you are going to have to be the one to get to the bottom of things. Maybe your chronically ill loved one is a child and they face unkind kids and impatient adults in their life. Maybe your loved one has to be hospitalized and are simply unable to advocate for themselves.
Here are some nuggets I have learned along the way (and most of them the hard way) when it comes to advocating. The desire of my heart is for you to have the knowledge you need to, so that you can be what you need to be for your loved one. This not only gets them better care, it can smooth relationships and reduce stress in crisis situations. These are going to be tools in your Caregiving Toolbox. You might not need them now, but friend, if you have someone in your life with chronic illness, you will need these tools sooner or later.
- KNOW YOUR STUFF! You cannot advocate what you don’t understand. Knowledge truly is power. It is power not to have to follow a doctor’s advice mindlessly. Research! Research! Research! Know how this disease or disorder affects the body. Research and make notes of the symptoms it typically displays. How is it usually treated and what are the side effects of the medicines they might give? Are there any other conditions that can occur along with it? Have a notebook of this information. Take screen shots. When you go in for your next appointment, you will be able to understand what the doctor is saying and you will be able to ask intelligent questions. Bring your notebook and make a note of anything you don’t understand, so that you can research it later on. There have been so many different times when doctors have asked me if I am a nurse. “No, why?” I ask them. “Because you really know a lot about such and such,” they say. I give them a weary sigh and reply, “Dr. (Insert name), when you have a kid that is puking day after day and swelling up like a balloon just because the weather changes, or if you have a husband who was once a weight lifter and a construction worker, who now has to fight to breathe and stay awake, you learn everything there is to learn about anything that could be causing this.” Some doctors (the good ones) respect this. And honestly, some will be majorly annoyed. BUT IT DOESN’T MATTER. Remind yourself, if you need to, that the doctor doesn’t have to like you. An advocate has very clear goals: to get your loved one the best possible care and to make sure they are as comfortable as possible given their condition. And sometimes that means a doctor is not going to like you.
- BE PREPARED! Not only should you be prepared with knowledge, you should also have relevant information available to give to the doctor. When I was at the beginning of our chronic illness journey, I had a dear friend, whose child had several medical conditions, walk me through this step and it was a life saver! You need to make sure to bring a medical history to all doctor’s appointments, especially new doctors. This needs to be a copy that they can keep for your file. Now they may put it in the “circular file” when you leave, but at least you did your part! Also, give them a copy of the medicines and suppliments your loved on is on. If there has been previous testing, bring a copy of the testing to put in the file. Also, it is wise to come with a few questions for the doctor, already written down in your notebook. It could be questions like what is their thinking on a certain controversial medicine or what is their protocol if such and such happens, or how to know when they consider a trip to the hospital necessary. Also make sure you get exact information on whom to contact if a medical issue arises. Write down the number and the person to ask for.
- BE CALM! Yeah. This one I can struggle with. Nothing burns my backside like a doctor telling me something isn’t a problem when I KNOW that it is. But my wise, aforementioned friend, reminded me that no flies are caught with vinegar. No, the doctor doesn’t have to like me, but it shouldn’t be because I have been belligerent or rude. You will be able to be a better advocate for your loved one when you can create a team mindset in those caring for them. Being respectful and kind, while still making your concern known, goes a long way.
- BE GRACIOUS! When advocating for your loved one with family members or school peeps, try to be gracious and give them the benefit of the doubt. Maybe they get frustrated with your loved one because they don’t understand what this illness is and the ramifications on them. Education and communication are key in this realm. Maybe take that family member out for coffee. Start the conversation with “I know it has been frustrating that Billy Jo can’t help you like he used to, but let me tell you why.” I have found bringing lab results with actual numbers is helpful for giving credibility to the situation. Keep family members in the loop so they see the doctor’s appointments, new symptoms, medicine side-effects, etc. These are little reminder to their brain that the illness isn’t being made up and their loved one isn’t being neglectful, lazy, insensitive, or whiney. Pertaining to schools, I have found it helpful to send notes and emails to teachers, principals, and parents of school friends giving a brief overview of the medical issues. I tell them how it affects my daughter and the limitations she has to have because of her illnesses. I also make sure to give a special thank you to anyone who goes out of their way to be thoughtful to my daughter. School is complicated when you have a child with a chronic illness, especially if it is a hidden one. The child may feel very differently than they look on the outside and that causes people to think they are fine, when they might feel like a truck hit them. Again, communicating these things and thanking everyone for their support and understanding can help to smooth out ruffled feelings and hopefully make the school experience easier for your child.
Chronically ill children and adult family members have so much “hard” in their lives. As caregivers and advocates, we only know part of what they go through. It is a high calling to advocate for someone, but it is a blessing to help someone we love get the best medical care and have the most comfort that they can. It can be depressing and overwhelming to have an illness that won’t go away. There are so many unknowns, but two things they can know for sure…we are always there and we will always fighting for them.