Health care providers and hospitals have the best intentions in mind; however, medical errors do occur. If you feel something is wrong, it is crucial to be your own health advocate and speak up. Bringing attention to a potential issue could prevent a future error with another patient. Meena Dhanjal Outlaw suffered a spinal cord injury over 20 years ago that left her significantly paralyzed. Here, she speaks about the importance of being your own health advocate.
All Doctors Are Not Created Equal
When I had my spinal cord injury seventeen years ago, it was evident that the type of medical attention I need is by doctors who understand a spinal cord injury. I lived far away from the rehabilitation facility that practically took care of my needs, so I sought a general physician close to home. Unfortunately, I found that she was not well-versed in treating patients with spinal cord injuries,
I could go to my general physician for common colds and other minor issues. However, I realized she didn’t understand how my body functioned after a spinal cord injury.
For example, every time I had to give a urine sample, she would note that there was bacteria in my urine and instantly say, ‘You have a urinary tract infection.’ and give me a prescription for antibiotics. I already knew from the specialized doctors I had seen thus far that I would only need an antibiotic if I had a fever or unexpected bladder accidents. So to avoid conflict with the doctor, I just never filled the prescription.
It wasn’t easy at times, but if I didn’t speak up for myself, then who will?
Pay Attention to Your Body and Ask Questions
At one point, I had to call my surgeon when I experienced a post-op problem. The surgeon had placed a port under my shoulder to provide easier access to the type of transfusion that will successfully treat the neuromuscular disease I have in addition to my spinal cord injury, which is called Myasthenia Gravis.
I knew there was a problem, considering the amount of blood oozing from where the incision had been made to place the catheter. The nurse in post-op knew that they had missed a stitch. After looking at the wound, the doctor didn’t think it was necessary to put in an extra stitch.
I was in pain the entire weekend after the surgery and felt I was consuming way too much over-the-counter pain medication.
Upon going for my second transfusion, I mentioned to the doctor that I was still in a lot of pain. He dismissed my pain, told me I had a small clot, and redressed the area.
Unfortunately, I felt I couldn’t speak up for myself at that time. However, since then, I spoke with my neurologist, who recommended pain medication. In addition, the doctors will now be keeping a closer eye on this area since I have several more treatments there.
If You are Concerned, Speak Up for Yourself
Self-advocacy isn’t always getting the result you think is necessary for you. Instead, it’s about not being afraid to speak up when necessary. Many people with a disability feel they cannot speak up for themselves because they don’t want to offend the doctor and possibly get more neglectful care.
I look back and wonder if I had spoken up at the time, would that surgeon continue to dismiss me or would I have had a weekend free of pain?
Take Charge and Educate Yourself – Be Your Own Health Advocate
The best form of defense for me as a woman with a spinal cord injury was to educate myself about my own condition. This helped me better take action over my situation and prevent specific problems.
For example, if I took the antibiotics every time the general physician prescribed them to me, my body could’ve become immune to antibiotic treatment. At that point of severity, the only way to treat a UTI would be intravenously in a hospital with a much stronger dose of antibiotics.
Today, I have a general physician who listens to me and is well-versed in treating patients with Myasthenia Gravis and spinal cord injuries. While visiting her means a longer drive, it’s worth it to me because her care is so important.
So to recap:
- Don’t be afraid to speak up.
- Become knowledgeable about your condition so that you know what to do even after leaving a physician with no treatment to remedy your issue.
- Find a doctor that understands
- Don’t be afraid of distance.
- Know your rights as a patient.
For further information on becoming your own health advocate and your rights as a patient, check out this helpful link www.patientadvocate.org, and remember knowledge is power.
Becoming your own health advocate can take time, but as Meena explains in her story, that tremendously helped her. There are many struggles that can come along with a spinal cord injury such as:
- Neurological issues that can lead to loss of bladder or bowel control
- Poor coordination or balance when walking
- Extreme back, neck, and head pain
- Changes in sexual function, sensitivity, and fertility
Being your own health advocate can help you feel more in control of your condition and have more confidence in the decisions you make for your medical care. When you take an active role in your health care, you are more likely to get the resources you need.
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