Tag: diagnosis

Chronic illness identity

Chronic illness warrior, chronic pain survivor, spoonie, chargie, dis-Abled, fighter, and all of the other labels used among individuals who face a myriad of long term illnesses….

It matters little how I refer to myself when I’m at a place where I feel there’s nothing I can do to overcome, conquer whatever my illness has brought to me.

The labels tend to carry little meaning when I’m facing the implications of my illness alone

They matter even less when I’m sitting in yet another physicians or alternative health professionals office and/or waiting room…

So why do I find such comfort in whatever label I choose for the day? Although it seemingly doesn’t change the trajectory of my chronic illness or the acknowledgment of my pain by others?

These labels may have little meaning outside of the communities they create which often transcends an individual’s immediate surroundings.

These labels thrive in cyberspace and it’s easy to see how certain events in the real world are crafted around these labels.

Personally, I’ve found them useful in cyberspace and I’ve enjoyed the disconnect in the connections I’ve created through these labels.

I consider it a disconnect because I only checked into these communities when I felt the desire to…otherwise, I stayed away.

Some years, I was connected to various chronic illness themed communities on a daily basis…I was even an administrator of one such community at one point

But once I received what I needed or at least once my outside support system stabilized, I relied on the amazing community less.

Now, I’m not a part of any particular community of chronic illness individuals. At times, I miss the relational aspects of the communities, I miss the feeling of being a part of something bigger, the feeling of not being alone…but for the most part I don’t miss it enough to immerse myself into any of these communities again.

It became overwhelming as I shared my story, my experiences with so many who could relate…it was sometimes overwhelming to witness the pain and suffering many of those individuals in these groups shared.

Now. I’ll mention various chronic illnesses or pains I endure, but I don’t want to be consumed by it anymore.

My illnesses impact every facet of my life daily…but my needs are different than they were years ago when I had to plug into the communities to maintain a semblance of sanity.

I’m forever grateful for the groups and the amazing people I’ve had a chance to interact with throughout the years of my intense involvement.

Endometriosis Fears

Being diagnosed with endometriosis in my adolescence was a blessing and a curse. I was glad to know that there was something wrong and it had a name. I was excited because I finally knew that I did not make up the pain; it was definitively real…with a name.

It didn’t take long for me to receive my diagnosis, considering that many individuals go years without a proper diagnosis. Endometriosis was always the suspected diagnosis from the very first time I experienced pain. The only delay in diagnosis was due to my age, my doctor didn’t want to subject me to an unnecessary surgery. We waited 1 1/2 years before surgery while trying oral contraceptives and so I could become an “official” teenager.

Once the official diagnosis came it was also a curse because I instantly developed fears about my future fertility and my future career.

I automatically assumed I was infertile and that NO man would want a woman who couldn’t bear his children. After reading information about endometriosis – most of which was provided by or recommended by my physician; I feared that I would never have a successful career either.

These thoughts, fears were compounded by my very premature mind, I was only a teenager – barely -and I tried to deal with a very mature problem. I wasn’t dying, but I often felt like dying was a far cry better than living In constant pain.

Today, I’m learning to put the brakes on as far as my fertility and career goes. No reason to worry about things that are not at the forefront. I’m currently working toward the career that I’ve always wanted and I’ve never tried to conceive so who knows what the future holds