Lynnette McMahon

Bile Duct Cancer
Community Voices

When You Don't Look Sick Enough.

#ChronicIllness, invisible Illness, #ChronicPain

Many suffer from an invisible physical illness. Some have more than one illness. They sit there lumped together on your medical chart. These are illnesses that there is no test for, no image can show it, no blood sample can confirm it.

Sometimes it’s very evident, physically, to others that you have an illness. Sometimes it isn’t. There will be individuals who listen, support you and believe you, And some who won’t. It can be extremely defeating to have a loved one or friend question your illness, simply because you do not fit the image of a sick person. An image, mind you, that they themselves construct from media or terminally ill patients with illnesses that can be confirmed on images or in blood work.

(That is in no way meant to compare terminal patients with invisible illness. I’m simply making the point that some think all illness will present physically, and if it doesn’t then it’s not a “real” illness. I want to be clear on that. )

Back to the ones who will question your diagnosis or your symptoms…

Sometimes doctors run tests that show nothing. That can make others question you even more. We know that medicine hasn’t figured out every illness or how to prove every illness. We know that there simply are no tests for particular illnesses. We know one test will not show an issue that a completely different test will detect.

I have certainly been there. My case involved one of my chronic illnesses, #SphincterOfOddiDysfunction.

According to John Hopkins Gastroenterology and Hepatology “The sphincter of Oddi refers to the smooth muscle that surrounds the end portion of the common bile duct and pancreatic duct. This muscle relaxes during a meal to allow bile and pancreatic juice to flow into the intestine. Sphincter of Oddi dysfunction refers to the medical condition that results from the inability of the sphincter to contract and relax in a normal fashion. This may cause obstruction of bile flow resulting in biliary pain and obstruction to the flow of pancreatic juice, which can lead to pancreatitis.”

How it began… After I lost my gallbladder in 2002, I thought I was back on track to normalized, no pain days and nights. I spent three years in pain before my gallbladder actually ruptured. I was bad off, had surgery, took a while to feel better, but eventually I was back to my pre-#GallbladderDisease state.

However… within a year I noticed a very uncomfortable feeling in upper right quadrant of my abdomen, felt very similar to the early stages of gallstones. Deep, aching, hard to describe pain. It was off and on, I ignored it at first.

Over the course of 10 years it progressed to a pretty extreme pain. Particularly after eating anything at all. It was worse at night, I’d come home from work and crawl to my bed in agony. I’d lie awake until 3 or 4am in pain. I could no longer ignore it.

I told my doctor, just like you are supposed to. I would explain the pain and symptoms to my doctor each visit. Blood tests were normal so heartburn was suspected… she prescribed antacids and I followed diet changes. Another year went by with no improvement. I told my doctor, who on occasion drew blood or upped the prescription.

By the 12th year of this I was in pain all day. I told my primary care physician again that it was not improving. She ran blood work again, did an x-ray of chest and abdomen and an ultrasound of upper right quadrant of my abdomen.

She saw nothing. At that point she told me my symptoms were “psychological”, she gave me a prescription for Zoloft and said no further testing would be done.

I left appointment feeling utterly defeated. She was saying it was all in my head, it was “mental” not physical. I questioned my own sanity. My family would say I was lazy and hypochondria was the issue… Not my stomach. This interaction was all the confirmation needed to them. I was not in pain. I was “mentally ill” and needed to get over it.

I was on the Zoloft, but pain continued and worsened. A month went by before I finally decided I need a second opinion. I switched PCPs and made an appointment with a doctor on my providers list.

Best decision I ever made.

This doctor sat with me for an hour. He took my family history, he took detailed notes regarding my symptoms and most importantly… He listened to me. He sent me to the Hepatology department at main hospital, a friend of his was there and my new Doctor trusted he could get to the bottom of my issues. The specialist listened and decided to schedule me for an MRCP the following week.

I went, it was an early appointment (about 7am) I spent 45 minutes in the machine, then went home. About 25 minutes after I got home the specialist’s office called. My scans showed something…

I had Sphincter of Oddi dysfunction and needed an endoscopic surgery to reopen the area. They explained it won’t likely be cured, but that they can treat it.

I cried.

Finally an answer.

Finally I could confirm without a doubt the cause of my pain. My family apologized for not listening or believing me. I forgave, but I felt a bit betrayed and hurt.

But I was happy to have an answer, scared a bit, angry at previous doctor… So many emotions.

I cried the rest of the day. It was bitter sweet.

Because my first doctor could not see my illness she didn’t believe me. Her refusal to order an MRI or MRCP left me in pain for a further 2 years.

This is one issue every chronic invisible Illness patient has in common. Someone, at some point, has questioned our symptoms or illness, they question our sanity or offer advice to fix the issue (and it’s typically something we are doing wrong or not doing).

Lets be clear… It’s okay to say “I do not understand (insert illness) can you explain it/explain why outward symptoms aren’t present?”

It is not okay to say “I think you look perfectly fine, it’s all in your head, you need to stop talking about it and work out more, stop gluten, go on a hike” (etc etc)

Just because you don’t see blood pouring from our eyes, our skin falling off and our organs bursting, does not mean we aren’t ill. We get it! You cannot see our illness on labs, images or our bodies… You also are not doctors so you giving advice is probably not a good idea … honestly your lack of medical knowledge is not the issue here.

The issue is your lack of understanding. It’s your preconceived notions about a person and their life, it’s your unsolicited “advice” that’s almost always pushing blame off on the patient.

We know our own bodies. You are not in our shoes and do not live a day in our skin. So please, don’t make assumptions regarding the level of discomfort, fatigue, pain and so on, that a person is in.

As for medical records, labs and Doctors… Well… news flash, Doctors aren’t perfect beings. They can be wrong, they can miss things, they can make mistakes. Tests are not always accurate, some cannot detect certain things and there isn’t always a specific test for the disease the individual has.

I wish all of our loved ones and friends would listen, trust us and educate themselves… But in reality not all of them will and not all will be open to education.

But you know what… it’s not about them. This is your health. It’s about your comfort, stability, peace etc. You can only do what you can do.

I have had many instances where my symptoms could not be seen on any test or image. #Fibromyalgia is a great example.

When I was diagnosed with fibromyalgia I was actually upset. I knew the stigma surrounding this illness. I heard the jokes, condescending lines like “yep I’m tired too”. Just knowing that others would secretly or openly judge me, call me lazy, mentally ill, or accuse me of faking my symptoms… That was what upset me.

Even now I struggle with telling people… Despite what we’ve discovered, the doctors who have admitted it’s real, and despite psychiatrists I’ve seen telling me “fibromyalgia is real!” I still fear how some will view me.

I have , trigeminal neuralgia and fibromyalgia.

I also have #MentalHealth issues (Agoraphobia, PTSD, #PanicDisorder and GAD) .

I don’t have to prove my illnesses to others. I don’t have to take the advice of others, unless I choose to. I consult with my doctors and trust our ability to come up with treatment plans that are appropriate for my life and my illnesses.

As invisible illness patients we will encounter those who mock, discriminate, or doubt us. You are not here to prove anything to anyone. Particularly any who simply refuse to hear you or one who implies you’re wrong about your symptoms and your body. It’s difficult to tune out those who unfairly judge us, it hurts. No matter how much we say it doesn’t… It hurts to be doubted or mocked. That’s just part of being human.

Every human can make their own minds up about invisible Illness, in the end you can only do so much. Keep working on your peace. Strive to be the person you want to be. Be compassionate and never feel you must prove yourself or your issues to others.

Stay strong and keep fighting. We can do this.

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