I was working on my novel yesterday when I came upon a revelation.

First you need to know the backstory of my story........
I've been ill since most of my life. Always had a lower immune system, and ended up with severe heat induced/ exercise induced hives young in life. Got to be quite debilitating by age 11. That went on for years when feeling lightheaded and then eventually passing out all the time became my common place during college.

I have never been able to fully financially take care of myself. I am 27. The health problems made it so I had to move back in with my parents at age 23 for 6 months. Now that I'm out I need help with having enough money to eat and pay the bills. I feel nowhere close to being a "grown up".

Some people on this site talk about the vibrant, active lives they had prior to dysautonomia. They were adults running marathons, in the military, active scholars, active moms and wives.

On one hand I can see how the loss of a vibrant active life is so depressing. But my revelation was that if I had had a successful vibrant active adult life PRIOR to dysautonomia I wouldn't have the pieces of fearing with great sadness that I will never be able to become a fully active, vibrant, career successful, financially independent being. I have no prior proof I am capable of this. Others feel stopped in their tracks. I would charge ahead more positively in my treatment and recovery knowing it is possible and proven that I could become such a person because I had already been one in the past.

I don't want pity for such a revelation but rather trying to get across two things:
To give a glimpse at what it's like for someone growing up "ill"..........
and perhaps to shed a bit of a light at the end of the tunnel for those who were indeed active, vibrant adults prior to their illness.

The last time I can remember being active and vibrant I was seven years old. If I could have been that way at 23 AND capable of paying my own apartment rent and car insurance, I know that I would be more confident in myself now at 27.

Nitekitty -

That is what can be so frustrating. I do charge ahead and keep pushing myself to try to get to that point where I am vibrant and active again but it doesn't seem to work. I want that again so bad!!!! Part of what is hard is that when I started with this whole ordeal, my confidence plummeted because I was so unsure of how to live with this and function and relate to people and try to make them understand. Having said that, it is those time periods (sometimes a few weeks or sometimes a few days) that I feel close to "normal" again that give me the hope that I can become that person again. Knowing who I used to be and wanting it so badly again is why I never totally give up. I have periods where I have had enough and just crawl in bed and say I'm done but I never stay there. The hope of becoming at least partially who I was (driving again would be HUGE) is what pulls me out (that and my kids and hubby).
I definitely hear your point. Although I suffered with female trouble all my life I didn't really start losing my everyday self until the last 7 years or so. I cannot imagine the challenges you have faced and the frustration and sadness or being stricken so young (I often say that about the children who have this).
Thank you for sharing your perspective and helping me count my blessings for what I do have an can do.

It's seems we've all taken different paths to get where we are now. I am "one of those" who became sick later in life, and have the career already which continues to sustain me. Believe me, I've very thankful that I haven't dealt with illness all my life.

I can't imagine always being "ill". Realizing what you're missing out on in your 20's has to be frustrating.

So, you're writing a novel? I've noticed you're a great communicator and you convey things in a very intelligent manner. Having so much potential and desire to be on your own, but then being unable to because of health issues has to stink.

Sounds like you have very supportive parents as well. My daughter is 25 and has experienced health issues all her life as well. I'm ashamed to say it, but I wasn't always understanding concerning her problems. I would do anything for her, but I've always pushed her a lot too. Sometimes, no matter how hard I pushed, she just couldn't function. As a parent, I wanted her to be "the perfect child" without any health issues. It took a long time for me to accept the fact the she is "perfect" even with health issues. And now she's found a career that she can be successful in without too many demands on her health.

It is my hope that your health will improve to the point that you can become more and more independent. Hang on to that supportive family you have though!

nitekitty- you don't say whether you completed college... just attending classes given what you've experienced was a huge display of initative, determination and grit. I know firsthand that its hard.
We need to put a human face on this disease for the world to see. I marvel how well educated we are as a group. There must be many more who are stricken and inarticulate.
I hope your novel is somewhat autobiographical. Good luck.

I've had this stuff for so long and was diagnosed with Panic Disorder (misdiagnosed) for years so I know what it's like to be dependent.

Even though I managed to have 3 children (now all adults and older than you nice-kitty) and get a uni degree in my 30s by pushing myself (if they told me it was all in my head I had to believe them even though my body didn't believe it) it's a hard thing being dependent on someone else financially. Especially when it's your partner. It feels diminishing. I've been financiallly dependent on him from the time when I became pregnant with our first child -- had a three year break in my late 30s from living with him (I think POTS was giving me less of a hard time and I was able to manage being a single parent)and truly those were my 'golden age.' Able to be independent financially and being head of my own household.

Having to rely on someone financially is the pits.

Getting the POTS diagnosis didn't change anything really. Except that I was no longer expected by doctors to just 'get out there and do it.'

I was pretty much labelled 'crazy' for the first 50 years of my life. And I was inexplicably able to do somethings sometimes and not at others. Sure eats away at your self-esteem.

I understand what it's like not to be independent financially for most of my life. It stinks. Even if you are lucky to be financially dependent on the most loving of people.