It's Just the Way You Are

I just turned 60. I have been questioning many things, regarding my health, for as long as I can remember. I went to doctors, or was taken, and never really got a satisfactory answer. I got a lot of "It's just the way you are" without any explanation as to WHY.

We did know that I had scoliosis, but opted to forgo bracing, because I had already undergone several major traumas in my young life, and I wasn't emotionally strong enough to endure 6 years of being ridiculed by my peers, for being "different" in yet another way.

The fall that changed it all

Fast forward to about 5 years ago. I had a minor car accident, followed less than a year later by a very hard fall. That fall changed everything, instantly. I started having vision problems, weakness, muscle cramping and/or spasms, horrible headaches, digestive issues, vertigo, crushing fatigue, and multiple other symptoms. I started falling down for no apparent reason.

It got so bad that I sought help, and almost by accident (I was being seen for something 'unrelated' when the subject was broached), I found out that I have a Chiari malformation, and that it is a birth defect. I had a Chiari decompression- brain surgery- 3 years ago, which helped. At least I don't fall down, or start vomiting at random.

A new type of flexibility

I do have ongoing issues though, that wax and wane, but never go away. I have since learned that I also have hypermobile Ehlers-Danlos. It's debilitating. I can't work. I literally don't know from one minute to the next how I will feel. I can't plan for spontaneous events. If it's big and important, I start resting up and self-care, for a week or more in advance, and make sure that I will have medication when I need it, because I WILL need it.

Community Poll

Which of the following did you feel or were accused of before your rare diagnosis? (choose all that apply)

This is the way I am

Truthfully, despite it all, finally knowing that there's a reason why "it's just the way (I am)" is VALIDATING. It all makes complete sense now. I am not a hypochondriac. I'm not exaggerating my symptoms. I'm not just lazy, and I'm not "milking" my situation. I am not a malingerer. I don't have Munchhausen; I didn't intentionally cause my own issues. I have crappy joints that are prone to injury. Yes, I have been accused or suspected of such things.

I am ill, and there's no fixing it. That IS my truth, no matter what ANYBODY else thinks. It's fact. I don't enjoy it. I don't actually enjoy saying "I told you so", but I sure think it a lot! The truth will set you free, even if the truth isn't great news. Hopefully, I can be more at peace, and better care for myself, for whatever years I have left.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RareDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Have you taken our Rare Disease In America Survey yet?