Of all the things I’ve experienced since becoming disabled, one of the steepest learning curves has been how to advocate for myself in medical settings. I’ve put together a list of things that can help you take care of yourself when you find yourself in the hospital or at the doctor’s office. Sometimes these environments can be intense or even a bit intimidating, especially when you are ill or in pain. Hopefully the following may make those times easier and may even help keep you safer.
You know your body best
This one may seem like common sense, but some medical professionals might forget that it’s true. Fortunately, attitudes are changing, but there are still those who might assume that since they have the degree they will always know not only what is presently going on with your body, but what is best for you. The knowledge, education, and experience of a medical professional should be respected, but so should your own experience of living with your body and your disability. If you have a hunch that something is not right, it’s up to you to speak up. Your body is yours to protect.
Many years ago, I wound up in the emergency room due to some bowel issues. This was early on in my disability experience – I had only had a spinal cord injury for about two years. Not only was I still learning about my body and how to treat it, but I was also still learning how to navigate the entire medical system. At one point during my stay, as I was laying on the bed the nurse came in with a bedpan and told me that I needed to put it underneath myself and keep it there. Since I am paralyzed from the waist down, that would have meant laying my full body weight onto the pan, where it would be pressing into places I had no sensation.
I looked at the plastic bedpan with its hard, thin edges, and I became very confused. In the spinal cord injury rehabilitation unit I had recovered in a couple years before, they had drilled into us how delicate the skin below our injury was, and how important it was that we take care of it. This meant, among other things, to never let anything remotely sharp press into our skin. The bedpan the nurse had handed me surely seemed to fit into that category.
However, she was a nurse — a professional — wasn’t she? Didn’t she have much more experience than I did? She worked in a medical setting with patients every day, and here I was, someone who had no medical training at all. Who was I to say that what she was telling me to do was wrong? Maybe, I thought, it will be alright. I let her help me up onto the bedpan.
She left the room. As each minute went by, my anxiety began to grow. All I could think about was those sharp edges pressing into my skin, making marks. The words of my SCI rehab therapists kept ringing in my head. Finally, before ten minutes had passed, I decided to roll myself off of the bedpan, any impending mess be damned.
When the nurse came back I told her my concerns, still a bit nervous and unsure. I talked about the sharp edges and my inability to feel if they were cutting into me. She seemed surprised and said that she hadn’t really thought about that.
This simple admission terrified me. These were the experts, I thought – these were the people who were supposed to take care of me; I had always felt that entering a medical facility meant that I could relax to a certain extent, because I was in the hands of people who had the education and know-how to keep me safe. I asked her to check my skin for red marks. Yes, there were marks, she replied. My heart sank. What had I done? What had we done? Thankfully all of those marks eventually faded, none of them turning into pressure sores (the nightmare of everyone with paralysis).
I learned a tough lesson that night, one that would be reinforced again and again over the years: That the person who knew best how to take care of me in medical settings would often end up being myself.
I was fairly young when the bedpan incident happened – in my early twenties – and before that the vast majority of my medical experience as a patient had been in a world-renowned spinal cord injury rehabilitation center. I had cut my teeth on being in a medical facility that was curated towards my specific disability, surrounded by people who worked with patients like me, day-in and day-out. They were the ones who were experts when it came to my body, teaching me everything I needed to know to be healthy and survive.
Coming out of that rehab facility, I had developed a certain trust in medical personnel – one that was not always borne out when I was released into the wild. My experience with the emergency room nurse was only the first of many incidents that showed me that unless I was in the hands of someone who had experience with my specific disability, I would need to become my own advocate, or have someone whom I trusted who could advocate for me if I was unable. Speaking up for or delegating my own care has become a vital skill in my disability toolbox.
It’s taken me a long time to come to a place where I am brave enough to do this just about every time it’s been needed – even now, sometimes I catch myself being intimidated when I am with a doctor who has a particularly dominant personality. If this ever happens to you, remind yourself that the doctor is getting paid – either by you, your insurance company, your government, or some combination thereof – and that their job is to provide you with a service. Think of them as part of your healthcare team, of which you are the captain. As a person with a disability, you may have multiple members of your team: doctors, family members, caretakers, therapists, even service animals – and it’s your job to manage them. Don’t let them manage you.
Some doctors might chafe against this shift in power dynamics. Some might be used to patients who simply do what they are told; who do not push back; who do not question their advice. Unfortunately, this can lead to a difficult doctor-patient relationship. At this point you may want to change doctors, if possible. If not…sadly, I admit I myself have not been above stroking an ego or two just to get the care I need. It would be nice if we could always adhere to our principles no matter what, but we do not live in a perfect world. Do the best you can.
Bring a notebook or use a phone or tablet.
Use these to write questions you may have about your health and record the answers; medication dosages and times of day; and names of doctors, therapists, and nurses. The last one can be especially helpful during hospital stays, when you might be visited by multiple people who only give their names and titles verbally. If you are having an extended hospital stay, it may also be helpful to write down your thoughts and feelings as a way to process stress. Even doodling can help – sometimes one can only watch so much TV!
Don’t be afraid to repeat requests
Hospitals are very busy places. You may have to ask more than once to get what you need, be that help with turning over, being brought medications or water, extra blankets, etc. The nurses helping you might be overworked or understaffed. Remember that they are people, too, who may not have control over how many hours they work or how many patients they are required to look after during a given shift. Being firm yet kind in your requests will often be the best way to get your needs taken care of.
Make sure any medical equipment you will be using is accessible
If you are having a medical test or procedure done and you have a disability that affects your mobility, ask ahead of time if the equipment they will be using is accessible. This includes exam tables (they are often high up, and many do not lower); x-ray tables (same issue); mammogram machines; gynecological tables; and more. If the equipment is not accessible to you, ask if there will be personnel available who can assist you in using the equipment so that you may get the medical test you need. If not, ask how they plan to help you get the test done. Be persistent.
As a person with paralysis and an inability to stand, getting myself weighed has always proved difficult. In my twenty-one years of having a spinal cord injury, I have never seen a doctor’s office that had a wheelchair accessible, roll-on scale. The ways I have tried to weigh myself have included going to a nursing home and using their roll-on scale (which only worked once because they became concerned about liability issues); driving onto scales used to weigh vehicles at a construction company with me in the car, then with me out of the car (final weight was wildly off); having my brother weigh himself on a home scale, then pick me up and weigh us both (which he can no longer do due to his own back issues); and going to my local hospital’s oncology unit and using their roll-on scale (no longer an option due to COVID-19).
I do get weighed when I am admitted to the hospital which is, thankfully, not that often. They have beds that weigh the patients. Additionally, I discovered that the medical building that my main doctor practices in has just one room that holds an exam table that not only has the ability to weigh me but can also lower to a height that allows me to transfer onto it. I had been going to this building for at least five years and not one person had bothered to tell me about this table until recently. Now, it’s up to me to request this specific room when I make an appointment.
Bring a list of your medications
For me, one of the more unpleasant tasks of going to a new doctor is completing the paperwork – particularly the part of the form that asks me to list my medications. It doesn’t help that the area provided is often only three to four lines long. After completing so many of these forms, always having to continue my medications on the back of the form or squish them into the margins, sometimes forgetting some of them, I finally came up with a fix. I typed up a list of my medications and supplements — including dosages, how many times a day I took them, and which ones were daily as opposed to as needed — and I keep two copies of that list in my backpack. Now, when I come to that section of those forms I simply write “see attached” and I ask the front desk person to make a copy of my list and attach it. I carry a second copy of the list because the first copy doesn’t always make its way back to me, and sometimes I’ll forget that by the time I get home. It saves me the next time I go to a new doctor.
Remember Outstanding Care-Providers
Whenever I’m admitted to a hospital, one of the things that makes me feel good is to keep a list of the care-providers that provide me with exceptional service. These are most often nurses but can also be phlebotomists (near painless needle sticks are always appreciated), those who bring me my food, or even janitorial staff. On your way out you can ask who the head nurse or “charge nurse” is for your unit, and how to contact them so you can communicate your compliments. Alternatively, after you get home you can go online to find the hospital’s customer service contact and ask them how you can give your appreciation. As mentioned before, hospital staff often work long, hard hours, and your praise can mean a lot to them – especially when their supervisors hear it as well. This can also help build goodwill, and if you ever need to return to the hospital, you might encounter some of the same staff who may remember your kind words. Treating people well increases the chances that they will treat you well in return.
Bring a hat
I’ll leave you with this final tip about taking care of yourself in the hospital: bring a hat or some other head covering. A hat has the dual function of helping to keep you warm and also covering up hair that might start looking pretty wild. Depending on your medical situation, you might not be able to shower for a number of days. While you may not think that looking good in the hospital will be a priority for you, I know that it sure does make me feel better to be able to easily cover up my greasy, stringy locks on day four or five, if necessary. As for staying warm, we all know how thin and breezy those hospital gowns can be. I’m someone whose body has a hard time with temperature regulation, so staying warm is always important to me.
I hope some of the knowledge I’ve gained from my medical experiences helps you take care of yourself. Don’t be afraid to stand up for yourself, speak up for your needs, and to be persistent if you have a strong feeling that something’s not right with your body. Nobody lives with your body — with your disability — but you. We, and those who truly love and respect us, are our best advocates.