A Chronic Fatigue Syndrome / M.E. interview , Dysautonomia / POTS, Fibromyalgia, Hypotrichosis with Juvenile Macular Degeneration, Lyme Disease.

Amanda's interview


How did all start?

I got Mono at age 16 and it went untreated for 4.5 months. Because of this we believe it attacked my nervous system and turned from chronic mono into ME.

Do you already have a diagnosis? How long did it take you to get it?

I was diagnosed in 2016 and it took about 15 years to get diagnosed. I was eventually sent to the Mayo Clinic where I was diagnosed after my regular doctors gave up.

For what medical specialties have you been treated? What has been the most useful specialty for your?

ME Specialist

What has been the most useful thing for you so far?

I am just now getting treatment but being validated and not crazy has gone a long way.

What have been your biggest difficulties?

Giving up everything I have worked for. I had an amazing job with tons of potential and growth. I worked for my MBA and had big dreams. Having to walk away is something I struggle with daily. Knowing I will never be able to achieve my goals is heart breaking.

How has your social and family environment reacted? Have your social or family relationships changed?

I have no social relationships. My parents and husband understand but no one else in my circle does. I am lonely and cast a way from everything and every one.

What things have you stopped doing?

Going out with friends Cooking Baking Going on trips

What do you think about the future?

I fight to be a part of my kids lives. So that they know they are loved. I don’t have a future. Not any more. I am trying to pull my weight but usually feel like a burden. I would love to be able to take care of my family and a part of their lives...even if that was all I think I would be happy with that.

So far, which years have been the best years in your life? What have you done during them?

My early 20’s. I knew something was wrong but not what so I decided it would not get in my way. I graduated early from college, got my first job, got married, moved to get my MBA and started my career. I put my own mark on my life and was invincible...or so I thought. I had my first child! And then could not keep up...

What would you like to do if you didn’t have your condition?

Go back to my life!

If you had to describe your life in a sentence, what would it be?

For every action there is an equal and opposite reaction.

Finally, what advice would you give to a person in a similar situation?

Don’t ignore the symptoms. You cannot ignore them away and you WILL make yourself worse. Know your limits!

Interview Chronic Fatigue Syndrome / M.E.

Mar 1, 2018

By: Amanda

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