The Importance of Being Your Own Health Advocate

wworking on laptop and woman on phone writing notes at deskoman in wheelchair

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

Doctor Discussing Medication with his patient as they sit next to one anotherAt 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

older woman sitting in a chair and reading a book

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.

At Personally Delivered, we carry home delivery medical supplies for a wide variety of conditions. Whether you are looking for adult disposable diapers, incontinence pads, protective underwear, catheter supplies, or any other medical supplies, we have got you covered. Our friendly, knowledgeable, and caring Product Experts are just a phone call away and ready to assist you in the purchasing process.

About the Author

Meena Dhanjal Outlaw

On January 23, 2000, Meena suffered a spinal cord injury that left her a T12 paraplegic. She worked hard to grow and push past adversity and challenges and even went back to school for a four-year diploma in writing for teenagers and children.

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Having a Spinal Cord Injury and Regaining Independence

man in wheelchair smiling and raising his fist in success

A spinal cord injury is an often disabling medical condition caused by damage to the spinal cord or the nerves near the end of the spinal cord. Depending on the location of the injury on the spine, paralysis can occur in some if not all parts of the body. The higher the injury location on the spine, the more assistance a person most likely will need.

Becoming disabled after a spinal cord injury can truly be devastating. However, many individuals – even with high levels of paralysis, such as quadriplegics, go on to be extremely successful and productive members of society. Many also have relationships, including marriage and children.

Managing Life at Home After a Spinal Cord Injury

The biggest concern for anyone who has a spinal cord injury is how they will manage it. This thought happens most often in the early stages of their recovery. When I had my spinal cord injury, I couldn’t do much for myself either. After having a back fusion surgery where rods were surgically placed all the way down my spine, I had to wear a TSO cast that encased my entire upper torso. It gave time for the rods to fuse with my spine. During this time, I was under many restrictions, such as when I wasn’t wearing it, I had to remain in bed and could not even turn myself. After twelve weeks, I was completely free from wearing this cast, but I still couldn’t lift more than five pounds.

As much as I appreciated all this attention to detail, my biggest concern was that I had infant children. My youngest was a newborn who had never been less than five pounds. So, I had no choice but to hire help. It was the only way I was going to have any chance of working on myself. I hired a nanny to live with me to take care of the baby at night. During the day, they went to daycare.

I was in a rental wheelchair when I went home from rehab. I was also sleeping in a hospital bed until the orthopedic surgeon felt it was safe for me to sleep in my own bed. Before I had left rehab, I had hired a home health aid. She wasn’t trained in personal care, such as bladder and bowel incontinence, but she was willing to learn, so the rehab facility taught her. She helped me shower, take care of my bathroom needs at home, dressed me, and helped me into my wheelchair. Once I was in the wheelchair, I was at least mobile.

Then, I learned to drive. I received assistance from DARS, now known as Texas Workforce. They helped pay for the hand controls installed in my car and the lessons to learn how to drive a modified vehicle.

Going Back to Work After a Spinal Cord Injury

woman in a wheelchair working on a computerLater on, when I chose to go back to college, Texas Workforce helped pay for courses and books that I needed. When I got further education to write for teenagers and children, they continued to help me achieve my ultimate goal to be a full-time writer. I chose to work from home, so with their help, I had my office set up with adaptive equipment, including an ‘uplift desk.’ There was no excuse for me to not be productive, so I went to work.

Going back to work after my spinal cord injury was one of the best decisions I could have made for myself, along with learning to drive. The sense of independence I felt was heaven sent. Within months, my confidence as a writer grew. With continuous physical therapy, I also gained upper body strength to take care of my own needs.

I wasn’t shy about seeking psychological help either. I was grieving the loss of my legs and how my spinal cord injury affected my life after that. Everything changed for me, and I could either sink or swim.

Regaining Independence After My Spinal Cord Injury

After my youngest reached four years old, I let go of the nanny. That had been one of the many goals I had set for myself. So from that point on, I was taking care of my two children alone.

I’ve always said that life is about choices, but my thought process became warped when I had my injury. Eventually, I gained hope, which ultimately gave me the strength to keep moving forward. I went on to marry again and have another child. Through all of this, I have learned I needed no help this time around caring for my third child.

What I Learned on My Journey to Independence

group with disabilities from spinal cord injury sharing a beer and playing gamesWhat I have learned the most throughout my self-discovery journey is that there are some really nice people in the world. One of them I married, and the others are my closest friends. I also found that the more I do, the more respect I gain from those who don’t quite understand my disability from my spinal cord injury. However, what they see is a self-sufficient, strong, confident mother of three who happens to be in a wheelchair.

If you or someone you care for has a disability due to a spinal cord injury or any other medical condition, some of the mobility and adaptive equipment and incontinence products we carry may help in everyday life. For more resources, help to find support, and to read other’s stories, the United Spinal Association is a great place to start.

If you have any questions or need more information on the home delivery medical supplies we offer, our Product Experts are just a phone call away and ready to assist.

About the Author

Meena Dhanjal Outlaw

On January 23, 2000, Meena suffered a spinal cord injury that left her a T12 paraplegic. She worked hard to grow and push past adversity and challenges and even went back to school for a four-year diploma in writing for teenagers and children.

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