Developing Self-Advocacy Skills for Medical Procedures

Self-advocacy skills are not your first thought when you receive a diagnosis. After receiving bad news, you expect help and support. You don’t expect to have to problem-solve, fight for information, and speak up to get the help you need.

But things don’t always turn out like you expect.

Following my diagnosis with Alpha-Gal Syndrome, I wanted to rely on my doctor and healthcare professionals to tell me what to do. I quickly learned that it wasn’t so simple.

My doctor though Alpha-Gal Syndrome was just a red meat allergy, and didn’t tell me that I could have allergic reactions from mammal byproducts. Most nutritionists and doctors I talked to had never even heard of AGS. I had to educate them before I could even ask their opinion!

I learned the value of self-advocacy, especially when communicating with healthcare providers. If you have Alpha-Gal Syndrome or another diagnosis that few people are aware of, your self-advocacy skills might be the only thing protecting you.

In today’s post I want to share a recent experience I had communicating with healthcare providers, so you can be better prepared for advocating for yourself.

Expect Ignorance

I have put off having a colonoscopy for the last couple years due to fear. Part of my fear was because, well, nobody likes colonoscopies! But I was also dreading explaining my AGS diagnosis to various doctors and nurses.

Having said that, I recently decided that this summer was the time to finally get that colonoscopy. So I set up an appointment.

Oh my! The first nurse who called to set up the procedure was very nice when I told her I had Alpha Gal. Her response was, "Yes, I've heard of ALPHA GAMMA, one of the big bosses has that. None of our patients have ever had a problem."

Let's be honest, her response was not reassuring.  

I realized that I had to expect ignorance. I really had no idea how very few medical providers are aware of Alpha-Gal Syndrome. But, as continued through the process of preparing for a colonoscopy, I didn’t talk to a single healthcare provider who was educated about Alpha-Gal Syndrome.

Not a single one.

It wasn’t their fault. But, considering how Alpha-Gal is a leading cause of anaphylaxis, I had hoped that they would have been educated on AGS at some point in their career. My first step in self-advocacy would have to be educating the healthcare professionals who were supposed to be taking care of me.

Always Check Labels

When you have Alpha-Gal Syndrome, one of the best self-advocacy skills you can have is to be knowledgeable about medicine labels and be willing to speak up about it. Medicines often have ingredients made from mammal byproducts, making them unsafe for people with AGS.

Of course, most medical professionals don’t know this.

When I received my prescription for the colonoscopy cleanse, I called my local pharmacist to see if the medication would be safe for me. I told her I had Alpha-Gal Syndrome and explained that it made me allergic to mammal and mammal by-products. Her polite response was, "Ma’am, the only medication I know that's made with mammal is thyroid medicine."

Well. That wasn’t too reassuring either.

I started explaining about mammal byproducts in medication and started naming ingredients. This hit home, and she began to help me search for ingredients that might cause an allergic reaction.

Be Persistent

At this point in the story, I had alerted the nurse about my AGS and had checked my prescription for mammal products. That done, all I wanted to do was put the appointment out of mind for a while.

But, after I got over the “Alpha Gamma'' remark, I decided to call the gastroenterologist office back and make sure they understood the seriousness of my Alpha Gal Allergy. Because Alpha Gamma is a whole different issue!

I left a message on Friday. I never heard back. So on Wednesday I called and left an additional message. The lady who returned my call was very professional and directed me to the endo department of the hospital, as they would be coordinating all the people involved in the procedure.  

So, I called the Endoscopy department.  The person who answered the phone was kind but had never heard of Alpha Gal and asked how to spell it. Once I told her it was caused by a tick bite, she recognized it, but had never known what the allergy was called. I told her no lactose, no gelatin, etc.  She pretty much cut me off and said she would get back to me closer to the procedure date.

Ughhhhh!!! 

If Self-Advocacy Is Not Enough, Get Help

At 5 days from the procedure, I still had not heard back from either the GI doctor or the hospital to discuss the colonoscopy and the medicines they might use. I was very frustrated at this point. If I wait until the last minute to cancel, I would have to pay $100 dollars. 

I realized that my self-advocacy skills might not be enough. They weren’t paying attention to all of my efforts to obtain safe healthcare.

While the colonoscopy wasn’t technically necessary, I have a family history that made it more important than just the standard medical procedure at age 50.

So, I  posted to several Alpha-Gal Facebook groups on Facebook to get advice as to how to proceed. These support groups are my go-to place for advice and support. The people are the best, and are full of encouragement and wisdom. 

The overwhelming response from fellow AGers was to cancel the colonoscopy or at least postpone it.  Some folks suggested I find another doctor that is Alpha-Gal literate. Others suggested that I call the hospital and ask for a patient advocate. Patient advocates are designated staff or volunteers that are trained to help you navigate healthcare issues. I hadn’t even thought of looking for someone like that!  

All of the helpful answers I received helped, once again, to remind me that I am not alone. There are many other people out there with Alpha-Gal Syndrome, who face the same obstacles that I face. I had been trying to do everything on my own, but their advice reminded me that it’s okay to get help. Self-advocacy skills are important, but that doesn’t mean you have to face every obstacle alone.

Be Patient

I called the GI doctor’s office on Friday before the scheduled appointment.  I tried several times to get someone to pick up, but ended up leaving a cordial message that I needed to cancel my scheduled colonoscopy because I had not had open communications with their office and did not feel confident that I could have the procedure without issue.  

A couple hours later, I received a call back from the GI office. This nurse apologized for the lack of comfort I felt, but said she herself had reached out to the Endo Department at the hospital. She was told that I would not be able to talk with the anesthesiologist or the nurse until right before the procedure…and that they would be the ones to decide if I could move forward with the procedure.  

Personally, I didn’t want to prepare for a procedure and show up only to find out that it was unsafe. Especially when a few simple conversations beforehand could answer all my questions.

So I kindly made it known that I was not comfortable with this, and that I still wanted to cancel the procedure until I was able to talk to medical professionals who could assure me that they understood my allergies and could perform the colonoscopy without issue. I asked for a patient advocate, but this person didn’t know who handled patient advocacy. Instead, she gave me the name of the lady that is head of the Endo Department and suggested that she could help me further.

After that phone call, I messaged my primary care physician to ask if she could recommend another GI doctor who was more familiar with my condition. 

I realized I might have to start all over again…a new doctor, scheduling a new appointment, the same process all over. That was a daunting thought. But since I have been diagnosed with Alpha-Gal Syndrome, I have learned that patience is vital.

I hope my story has given you a little insight as to what could happen if you need medical procedures, and how important it is to develop strong self-advocacy skills. I’m going to do some further research on safe protocols for the hospital, and will post my findings here on my website in the near future.