It Should Never Take A Decade To Get A Diagnosis

It Should Never Take A Decade To Get A Diagnosis

It's hard to take your health seriously when even your doctors don't.

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I started experiencing problems when I was only nine. Horrific cramping, unexplained fevers, excessive bleeding, nausea, pain that left me unable to move...My periods were miserable. When I no longer had breaks in my cycle, simply periods of time where I was bleeding less than other times, my parents rushed me to the doctor. By middle school I was on birth control, but I was still always in pain. But I was told it was normal, so it must be fine.

When I would listen to people complaining about IUD insertion pains, I would laugh. That stuff was nothing! I needed to sit for a few minutes, then I went straight back to work and school! My cramps were so much worse! But come on, my cramps were normal, right?

At 14, I started complaining more about the pains. Then 16. Then 18, 19, 20. I had to fight with my doctors even after they found significant hormonal imbalances - after the painkillers didn't work as well as Aleve or Ibuprofen, after I was curled up in bed popping prescription anti-nausea medications. No matter what the doctors said, this wasn't normal.

I'm 21. I have an appointment to talk about surgery for endometriosis, something that should have been treated when I was a preteen. Despite my complaints, I was ignored until far too late. I will likely never have biological children, I need Botox injections every three months for related migraines, and I still have no idea whether or not I'll feel better after this surgery.

It took 12 years for my doctors to take notice, but my story is still far better than some others.

It's estimated that approximately 40% of diagnoses were either incorrect or completely missed—meaning that 40% of the things you complained about to your doctor may have been prematurely brushed aside or misdiagnosed. If we're talking about a cold misdiagnosed as allergies, this typically isn't a big deal. Unfortunately, colds aren't the only things being misdiagnosed. According to a study by the Mayo Clinic, 20% of people with serious medical conditions seen in their research facility were misdiagnosed before seeing them, and a whopping 12 million people will be misdiagnosed annually.

Sometimes these mistakes lead to tragic consequences. On 17 December 2017, 12-year-old Alyssa Alacraz died of what her parents were told was the flu, but her autopsy found something horrifying—Alyssa didn't have the flu. Instead, Alyssa had died from cardiac arrest and septic shock, the most severe form of blood poisoning called sepsis. While life-threatening, she would have had a fighting chance if she had been hospitalized immediately.

Instead, she was sent home with ibuprofen and died three days later.

You may ask: as patients, what can we do?

The answer is simple. Be the squeaky wheel. Speak up, demand results, and don't be afraid to change doctors if need be. Doctors are excellent, but sometimes it takes some time to find the right one that will listen to you and properly address your problems.

Don't be like me. Definitely don't be like Alyssa. Speak up for your health.

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Everything You Will Miss If You Commit Suicide

The world needs you.
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You won't see the sunrise or have your favorite breakfast in the morning.

Instead, your family will mourn the sunrise because it means another day without you.

You will never stay up late talking to your friends or have a bonfire on a summer night.

You won't laugh until you cry again, or dance around and be silly.

You won't go on another adventure. You won't drive around under the moonlight and stars.

They'll miss you. They'll cry.

You won't fight with your siblings only to make up minutes later and laugh about it.

You won't get to interrogate your sister's fiancé when the time comes.

You won't be there to wipe away your mother's tears when she finds out that you're gone.

You won't be able to hug the ones that love you while they're waiting to wake up from the nightmare that had become their reality.

You won't be at your grandparents funeral, speaking about the good things they did in their life.

Instead, they will be at yours.

You won't find your purpose in life, the love of your life, get married or raise a family.

You won't celebrate another Christmas, Easter or birthday.

You won't turn another year older.

You will never see the places you've always dreamed of seeing.

You will not allow yourself the opportunity to get help.

This will be the last sunset you see.

You'll never see the sky change from a bright blue to purples, pinks, oranges, and yellows meshing together over the landscape again.

If the light has left your eyes and all you see is the darkness, know that it can get better. Let yourself get better.

This is what you will miss if you leave the world today.

This is who will care about you when you are gone.

You can change lives. But I hope it's not at the expense of yours.

We care. People care.

Don't let today be the end.

You don't have to live forever sad. You can be happy. It's not wrong to ask for help.

Thank you for staying. Thank you for fighting.

Suicide is a real problem that no one wants to talk about. I'm sure you're no different. But we need to talk about it. There is no difference between being suicidal and committing suicide. If someone tells you they want to kill themselves, do not think they won't do it. Do not just tell them, “Oh you'll be fine." Because when they aren't, you will wonder what you could have done to help. Sit with them however long you need to and tell them it will get better. Talk to them about their problems and tell them there is help. Be the help. Get them assistance. Remind them of all the things they will miss in life.

If you or someone you know is experiencing suicidal thoughts, call the National Suicide Prevention Hotline — 1-800-273-8255

Cover Image Credit: Brittani Norman

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An Incurable Disease Doesn't Change The Love I Have For You

Because one day the one you love the most is fine and the next day they're not, it causes devastation you never truly recover from.

nadoty
nadoty
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Loving someone with an incurable disease is the most emotionally straining thing I have ever experienced.

My significant other and I have been together for almost six years. During the summer of 2018, we all noticed the significant changes he was going through. He had lost around fifty pounds and had a lack of appetite. We had figured something was going on, however, we didn't realize it was anything serious.

Fast forward to the Fall semester of 2018. I had visited my boyfriend and we had expressed certain concerns, such as, through the night I would try and get him to stop uncontrollably itching his legs to the point of bleeding, or that he was looking a little yellow and was exhausted all the time. After seeing his sister in November, while I was at school, she pleaded with him to go to urgent care because he did not look good. He was yellow, exhausted, and very sickly looking. We didn't realize that the urgent care visit would be the precedent of the rest of our lives.

After coming home for Thanksgiving and spending a week straight in the hospital with him, it finally set in that something was not right. Between all the vomit, getting moved for testing, the weakness, the constant calling for medications because the pain was so severe, and the almost month-long stay in the hospital, it hit me full force that something was really wrong. Words will never truly describe the emotions I was feeling, or the burden of my thoughts that I felt were too selfish to pass on anyone, so I kept them to myself.

When we finally got the diagnosis, we were surprised. PSC, otherwise known as Primary Sclerosing Cholangitis, is an incurable liver disease that affects the bile ducts which become scarred and inflamed, more likely than not lead to cirrhosis and an inevitable transplant. There was no cure, rather the only solution was a liver transplant, and even then the disease can be recurring.

I was thinking selfishly. I was torn in two. What would our future look like? Could we have children? Could we ever do the things we used to?

Loving someone with an incurable disease is a mix of emotions. There is a constant fear in the back of my mind that he is going to wake up in intense pain and have to be rushed to the hospital. There is a constant fear of every time waiting for the bi-weekly blood test results to come back, in fear that his Bilirubin spiked again or he is undergoing a flare up and needs to be hospitalized. There is a constant anxiety that one day he's going to be fine, and the next day he won't be. Even the simple things, such as laying beside one another, was a constant fear I had, due to the pain he was in every day. What if I hit him in my sleep on accident? What if I accidentally hugged a little too tightly and caused him pain?

Loving someone with an incurable disease can be a fluctuation of emotions, however, he makes it worth it.

nadoty
nadoty

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