Wish You Could See


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What it feels like to be undiagnosed:

It happens slowly. First the tiredness and then the symptoms come on – one by one. You go to the doctor, expecting to go home with magic medicine and, soon, you’re going to feel better.

But what if that never happens? What if you never feel better?

Doctor after doctor examine you, trying to make sense of your symptoms.

They don’t have the answer, either.

Run this test or start that medicine.

The tests keep telling you that you are fine; You’re healthy as can be.

But you’re dying on the inside.

Some don’t believe that you’re sick; That it’s just all in your head.

You start to think maybe they are right.

But you keep searching for a cure anyway. Some way to manage your symptoms.

You spend your days learning medicine.

Medicine is no longer a science, it’s an art.

One you haven’t mastered yet.

You pray for a name, a label… Something, Anything

Something to make sense of it all- make sense of the pain inside.

To give you hope that someday it will get better.

Year after year that goes by – and every doctor that you see leaves you feeling even more lost than ever before.

You’re undiagnosed.

Left to be the ghost of who you used to be – and may never be again.


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The Problem With Being Undiagnosed?

1) You can’t use your benefits.

At some point, you may become too sick to work. You can apply for disability benefits through work, but more likely than not, they will deny you for lack of proof.

Yes, your symptoms are documented. You’ve been to every doctor in the world. Your list of medications is incredibly long. You have every test and procedure on record. But none of these supply objective proof that you’re sick. Nothing else matters, especially in insurance.

Same thing with Social Security Disability.

2) No one takes you seriously.

Friends, family, doctor’s, employers, etc.

If you don’t have a diagnosis, you must not really be sick. Or it’s in your head. Otherwise, the doctor would have found it….

While it’s wrong, it still happens. It’s also hard to explain the unknown.

3) You have no medical home.

When you’re sick, who do you call? You have so many doctors, which is a catch 22 if you have multiple symptoms. Call your primary care doctor… no, call your GI doctor.. the immunologist needs to handle that…You end up going in circles….

Plus, most of the time doctor’s are so busy and they don’t communicate with one another. So it’s on you to manage your own care. Who needs what notes? Who prescribes what med? Who is handling what paperwork? It’s exhausting.

Let’s not even talk about doctors dismissing you from their practice because “there’s nothing else they can do for you” -or- they believe you’re malingering -or- just want pain medications.

And god help you when you have to find a new doctor.

4) Despite trying different medications, diets, and lifestyle changes, you don’t know what you really have.

You can try to make it better, you do try to make it better, but how do you know what exactly is helping or hurting? Now, I know a diagnosis doesn’t guarantee a cure or that you’ll feel better, but at least you can follow a protocol, read books, talk to others with your exact condition. Being undiagnosed is blind. Treatment is blind as well. You’re just forced to live with it, deal with it.

5) Your condition gets worse because it wasn’t treated or managed in time.

Again, not to say a diagnosis means that your illness won’t progress, but it happens far more often than not with those who can’t find the help they need.

6) There’s no support group for you. No ribbon to wear.

And only a few organization help patients who are undiagnosed.

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Luckily, other chronic and invisible illness communities accept us with open arms.

Ghosts of the Undiagnosed.

Because at one point, they too were undiagnosed.


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What Can You Do?

  • If you’re undiagnosed:
    • Read, Read, Read. Do as much research as you can. Learn medical terminology and abbreviations. Read medical journals, case studies, or peer reviewed articles. Just avoid WebMD, Wikipedia, and the like when looking for information. There’s also a ton of great books on becoming your own patient advocate, how to navigate the healthcare system, and even some on being undiagnosed. Knowledge is power when it comes to actively protecting your health and care.
    • Be organized! Keep copies of everything, from every doctor. You never know who or what will be important at a later time.
    • Keep a symptom journal, document every pain and every symptom.
    • Take pictures of the visible symptoms, no matter how unimportant and unrelated it seems. It’s a way to document objective proof. And you can show it to your doctors as well.
    • Prepare for your appointments. Write down any questions, any medications, and any symptoms. Stories help to put your symptoms into context, helping your doctor to better understand how your symptoms affect your life, as well as possibly giving insight to what may be causing them.
    • Google Your Doctors. Read reviews, talk to other patients. If you feel like you’re having problems or not getting the proper care, it’s likely others are too. This will tell you whether you may just be sensitive about the issues or if you do need to look for other care. It may just be your condition is truly that rare or hard to diagnose, but it’s good to know if you are in good hands or not.
    • Sign up for clinical trials and research studies. Sometimes you can try new medications or have testing done for free. In clinical trials, they monitor you very closely and maybe it could lead to more answers or pieces to the puzzle. You just never know.
    • Tell your story. By sharing your experiences, you may find others going through the same or similar experiences. To know you’re not alone. It also helps you to get things your chest and helps others to understand.
    • Keep searching. Never give up. You deserve to feel better, to have answers. Even if your condition is rare, if you can get a diagnosis then you’re helping to advance the world of medicine, perhaps even helping others who are also searching for a diagnosis.
  • For everyone else:
    • Spread Awareness! Help us have a voice in the medical community. Help us to get better, join our search, support us.
    • Believe us, and believe in us. No matter the illness or condition, diagnosed or undiagnosed, we fight every day for some sense of normalcy and peace in our lives. We work so hard to continue to have hope and to stay positive. We are lonely, tired, scared, and in pain. However, nothing hurts us more than feeling like we have to prove how sick we are.

Somewhere you’re not coming back…


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The highs and lows of chronic illness are overwhelming. One minute I am strong and powerful, feeling like I can take on the world. The next, I feel like my world is falling apart all around me. Hour by hour and even day by day, life changes so drastically: I’m tired, I feel good enough, I am violently sick… I’m happy to be alive, I’m sad to live this life, or I’m numb to my feelings. I realized, after the emotional train-wreck that was my day was today, that being sick reminds me of how life was shortly after my mother died… I am stuck and lost within the five stages of grief…


The Five Stages of Grief in Chronic Illness:

1. Denial 

“It’ just a cold, it’s nothing.”

“There’s nothing wrong with me.”

“The doctor’s have no idea what they’re talking about.”

“I’m fine, everything is fine.”

“This can’t be happening to me.”

“It’s not getting worse, I promise.”

2. Anger

“Why me?”

“Life isn’t fair!”

“I hate this!”

“I’m sick and tired of being sick and tired.”

“I don’t want to do this anymore.” 

3. Bargaining

“Maybe if I do better…”

“God, if you make this go away I promise to…”

“If I keep doing good things, maybe my luck will turn around.”

“I promise I’ll try harder…”

“If only I had kept searching for answers…”

“Maybe I can talk to my doctor…”

4. Depression

“What am I going to do with my life?”

“What’s the point?”

“Life isn’t worth living anymore.”

“How am I going to afford to live? Or my medical bills?”

“I can’t do this anymore.”

5. Acceptance

“I can choose to give up or I can choose to fight.”

“My illness doesn’t define me.”

“I choose to keep going, despite my illness.”

“I have a greater purpose.”

“I will raise awareness to my disease.”

And today I felt all of these.

“I can’t believe this happening, not again…”

“I hate being sick. I hate this life. I hate not having answers. I hate the unknown.

I hate, I hate, I hate…”

“I need to talk to the doctor, it’s the only way…”

“I can’t do this anymore…”

“I have no choice BUT to keep moving forward.”

I Will Stay Positive…Maybe.

I grieve for what I have lost due to my illness. And what I won’t have in the future, either.

But mostly, I grieve for the loss of myself.

For all that I was and could have been.

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What My Chronic Illness Has Robbed Me Of:

  • My Dreams:
    • I wanted to do so much with my life. I was set to have a bright future.With all I manage regarding my health, I can only imagine the amazing things I could have accomplished by now. Imagine if I put all my energy into bettering my life, where I’d be?e3feea180cd8f191cdb9030765e8e9bd
    • Instead, I balance:
      •  Doctor’s appointments and medical testing, sometimes every day of the week and multiple appointments in the same day.
      • My Symptoms.
      • Medications.
      • Medical Records.
      • Scheduling and coordination of care.
  • There’s no big house with a white picket fence in my near future. Maybe not ever. Chronic illness is too unpredictable for such a big commitment.
  • Traveling the world.
  • My Career:
    • I’ve always worked hard, been an “above expectations” employee… continuing to learn, grow, and advance in every job, even when I started getting sick. But then it got worse…
    • I’ve had to change my career goals so many times, I feel like I am back in school… What do you want to be when you grow up? I Don’t Know!” ea7374914206b8416b76baac92fa71a2
      • Marine Biology?
        • nope
      • Real Estate?
        • nope
      • Veterinary Medicine?
        • nope
      • Management/Leadership
        • nope
      • Insurance
        • Health? -nope
        • Property & Casualty? -not sure anymore?
    • What’s next?
      • Veterinary Forensics?
      • Forensic Psychology?
      • Health Psychology?
    • My current job seems like they’re finally fed up with me. I can’t do disability because I can’t PROVE how sick I am.
  • My Ability To Do The Things I Love:
    • I had to quit competitive swimming.
      • and competitive cheerleading.
      • and roller derby.
      • and dance.
      • and surfing (when I was in FL).
    • I can no longer go on hikes or go camping.
    • Go to concerts and shows.
    • Set design/horror make-up/act in haunted houses and productions.
    • Go on long drives, exploring new places.
    • Traveling.
    • Volunteer with animal rescue groups.
    • Ghost hunting (don’t judge me…)

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  • My Appearance:
    • My hair keeps falling out.
    • I’m not “toned” because I can’t exercise like I used to.
    • Despite that I hardly eat, I often gain weight quickly. Then I lose it. Then I have stretch marks from the constant changing in my body.
    • My body is plagued with rashes and sores.
    • I can’t wear makeup most days because of how sensitive my skin has become.
    • I’ve lost pigment on my back, which is now also starting to happen on my chest, stomach, and arms.
    • I have giant, dark bags under my eyes… always….
    • Mostly, my confidence. And my smile.
Nevus Anemicus

Nevus Anemicus

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New rash after sun exposure

New rash after sun exposure

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Alopecia Areata

Alopecia Areata

Loss of Pigmentation on neck

Loss of Pigmentation on neck

My Relationships with Others:

  • My husband.
  • My family members.
  • My friends.
  • Some days, I feel like I can’t even relate to most people anymore.
    • I feel awkward and different.
    • I feel jealousy.
    • I feel disappointment. 

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  • My Faith:
    • in the health care system.
    • in people.
    • in medicine.
    • in myself.
    • in God.

I grieve often for all the loss in myself.

For what once was or could be.

It’s too easy to remember all the things that are gone.

That illness has taken away from us.

I wish I had appreciated and loved myself more.

That I had done more, lived more.

So many regrets….

But…

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What My Chronic Illness Has Given Me:

  • Strength and the ability to keep going, no matter how frustrated I get.
  • A great deal of medical knowledge I would have never gotten otherwise.
  • The ability to understand what it’s like to hurt, whether mentally, physically, or emotionally.
  • To feel and understand the struggle of others. AND the WANT to know other people’s struggles.
  • To draw awareness to the undiagnosed, the chronically ill, the invisible…
  • A drive to never stop searching for answers. In every area of my life.
  • Patience. Maybe not so much in wanting a diagnosis, but in everyday life. Like doctors offices.
  • Appreciation of those who stuck around and took the time to understand what it’s like to be sick.
  • The understanding that I can’t control everything, including my own life.
  • That knowledge that change, no matter how hard, can lead to good things.
  •  Love by so many people.
  • Friendship and understanding from other’s also going through a similar journey.
  • The ability to cry, smile, scream, laugh, and sigh… all within one conversation. Or blog post.

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But the biggest thing I learned is that there are so many ups and downs in chronic illness.

And if I hate how things are today, tomorrow is always a new day.

My future is not set in stone, and although I can’t make plans, 

I still have the option to live this life how I choose.

Hopefully find a diagnosis.

And make a difference in this life.

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Tonight I cry, but maybe there will be peace tomorrow.