5 Ways You Can Be Prepared When People Haven't Heard of Your Condition

Me: “Hi, my name is Jac.”
Crowd Response: “Hi Jac.”
Me: “And I have SOD.”
Crowd Response: (Crickets)
Me: “Sphincter of Oddi dysfunction, you know, SOD.”
Crowd Response: (Crickets)
Me: “It’s an upper gastrointestinal disorder, severe bouts of pain, nausea, vomiting…anyone?…no one?”

Nothing. Nada. Zilch. Listen up! We’re not alone. We can’t be. There are plenty of rare illness out there that nobody knows about or even can understand enough to put into laymen’s terms.

Us SOD warriors at least have the benefit of saying something along the lines of, “Have you ever thrown up so hard that some really awful tasting green bile stuff comes out? Well you see, we all have this muscle in our gastrointestinal tract that acts as a doorway for that stuff. When you eat food, that doorway is supposed to open. Mine doesn’t work properly causing a heck of a lot of pain.” And then we get some sort of glimmer of understanding or acknowledgement that the listener maybe gets it.

Even so, having to provide that explanation to the nosey-posies out there who happen to catch us choking down meds before every meal or running to the bathroom at the most inopportune times, or better yet, to the emergency room doctor whilst vomiting into those awful pink barf bins – it gets pretty freaking old!

After 12 years and four bouts of cheating death by acute pancreatitis caused, believe it or not, the treatment of my chronic illness (a common complication of an endoscopic retrograde cholangiopancreatography), here are five tips I can lend to help others cope with the “illness no one knows about.”

1. Self-educate. Learn as much as you can about your illness. If you’re up for it, peruse through PubMed and read studies relating to it. You will find that you come across more healthcare providers that know less then you do, and your knowledge can help point them in the right direction to get you the care you need or help you determine when you may want to look for a second, or third, or fourth opinion. Knowledge is power and self-advocating is key. My illness was so rare for a while I was told my symptoms were simply a bi-product of my anxious nature. Newsflash Dr. So and So, SOD is a thing, just ask Hopkins or the Cleveland Clinic.

2. Write an illness elevator pitch. People are going to ask questions and it is going to be frustrating. Take a moment to think of one to two sentences you can say in less then 30 seconds that describes your illness. Maybe focus on the part of the body it affects or an experience they can relate to. Unfortunately, everyone at some point has hugged the porcelain throne. It is not the most glamorous analogy I can use, but neither is my life with SOD, and honestly, this works to my benefit. It stops the person from wanting to know more. I always stick to my pitch and respond almost robotically. This helps me avoid the frustration of having to keep trying to explain my illness to others – especially if I really don’t need to.

3. Remember, you’re the customer. People with chronic illnesses who depend upon the healthcare system more often then they would like tend to forget that they are paying for a service. Quality care matters, especially for those of us with rare disease. “Rare” tends to equate to less awareness, knowledge and treatment options. If you’re not satisfied with your healthcare provider, speak up and let them know. If the relationship isn’t working for you, if there’s a lack of understanding or poor bed side manor, take your business elsewhere. It is your right!

4. Create an at home medical record. My mother is a genius. My illness onset was pretty young, so I had the benefit of my mother’s assistance when hopping from specialist to specialist before I was properly diagnosed. What she did that I am forever grateful for is immediately sign a HIPAA Authorization form to request a copy of my medical records from every hospital visit (right upon discharge) or every doctor we saw including their clinical notes. She then, along with the doctor’s business card, organized my records in a binder in reverse chronological order (putting the most recent visits in the front). That binder was a godsend because the first thing every single specialist said was, “I’ll need to review all her past records.” She even got so savvy as to make two copies of it and would drop off or mail the one binder to the doctor’s office in advance of my visit so they could review beforehand, that way the visit was not just them saying, “Hi, l need to review your records.” And now with electronic medical records and applications like “My Chart” or “My Portfolio,” you can print your own records out at home and not have to even drive to the hospital or office to pick them up. The more your doctors have on your history the easier it is for them to rule out what has already been done and think of alternatives that maybe haven’t been tried that can provide you with relief. Working as a team with your doctor could help get you the care you need more efficiently.

5. Listen to your body. I know all too well our bodies can be our worst enemies, but they can also be our best friends because they will give us warning signs that a flare-up is coming. Pay attention to the signs, do what you need to do to get comfortable, and breathe. Other people may not know about your illness or what your struggles looks like, but you do. You know your body best. Don’t let anyone convince you otherwise.

And remember, you are not alone.

We want to hear your story. Become a Mighty contributor here.

Gettimage by: Grandfailure