Saturday, May 21, 2011

The Difference Proper Support Makes

Until recently, I didn’t really know anyone else with these illnesses and felt very alone. 

I was fortunate though, in having friends who stuck around and a family who believed and supported me.  Many others are not so lucky. I can’t imagine what it must be like to be accused of faking illness or being abandoned by family and friends when they are needed the most.  My heart goes out to anyone who is or has been in such a situation.

When I could no longer keep up the push crash-cycle I was on and could hardly do my job, let alone take care of myself, I finally decided to take control.

I had already been to at least a dozen doctors without success.  I clearly needed to see an expert, so I fought my health insurance company until they agreed to cover one of the highly recommended doctors at the Hunter-Hopkins Center.

During my battle for coverage, I also discovered the Hunter-Hopkins Center's Facebook page.  Just reading the posts made me feel less alone.  I found myself looking forward to checking the page whenever I had the energy.

When I finally mustered up the courage to start posting, I found the interaction helped more than I could have imagined.  I found some of the strongest, funniest, and most caring and compassionate people there.  I have learned so much, and I finally don’t feel so alone in my struggles.

Although finding a supportive doctor was a daunting task, I found it was worth the effort. Finally being able to see a knowledgeable and compassionate doctor has made a huge difference in my life.

A diagnosis with no objective test to verify it can leave a constant lingering feeling in the back of the mind that maybe it is all just the head.

As much as I proved to myself over and over that thinking I could do something and ignoring my symptoms did not work, the nagging feeling always crept back.  I knew I felt ridiculously exhausted after doing the simplest of tasks, like brushing my teeth, but it was something that only I could feel.

At the Hunter-Hopkins Center, I was finally given tests that actually showed how impaired I was.  I was also diagnosed with additional illnesses, such as Multiple Chemical Sensitivities (MCS) and Postural Orthostatic Tachycardia Syndrome (POTS), which explained some of my symptoms.

I never felt more validated in my life.

Even after being diagnosed with a few of my illnesses for at least eight years, I still had a lot to learn about managing them.  I am still dealing with the consequences of pushing myself too hard for so many years, but I feel like I am finally on the right path to at least getting a better handle on my symptoms.

My quality of life has improved because of both medical support and the emotional support of interacting with others who are also struggling with these illnesses. I only wish I had found this support sooner.  I was 25 and had been ill for 12 years by the time I found it, but I know many others have struggled without it for much longer.

I am so thankful to be at the point where I have this support.


Now that you have read my story, I’d like to hear from you!

What was the biggest struggle you went through while trying to get a diagnosis or find a cooperative doctor?  Did you experience terrible side effects from a medication?  What illness-related topic or issue would you like me to write about next?

1 comment:

  1. Wonderful piece, as usual Barbara. Thank you for writing! I remember so well, that niggling at the back of my mind, wondering if the diagnosis was correct. That's the reason I finally went to a specialist, back in the early 90's. It was a very good feeling to have him tell me that I was a classic case, and he was 100% sure of it. Of course, it didn't cure me, haha, but it set my mind at ease. That was no small thing.
    I moved away from that area a long time ago, and find myself back to square one as far as finding a cooperative doctor. For the time being, I have given up, and am seeing a naturopath, and an osteopath. They don't know much about my illness, but are sympathetic, and doing their best to help. All in all, not too bad! :)
    Keep on writing, you're doing a wonderful job of it!