Saturday, May 9, 2009


Living with a chronic health issue can be very challenging, which I unfortunately have found out over the last couple of years. The multi-faceted difficulties effect every area of ones life in a primarily negative way. I must say though, I am deeply grateful that my issues occurred at this time in history, when the internet was available. There are so many resources that never would have been accessible only a few short years ago. Information on every aspect from the underlying pathology to support groups to social networking are now available at ones fingertips.

Until I began searching, I had no idea there were so many individuals not only living with chronic health problems but also available to reach out to others in need. Yes, the world can be a pretty nasty place sometimes, filled with suffering and pain, however, just to know others are there caring and dealing with the same problems seems to lighten the heavy burden.

Thank you to all the angels out there that despite their own suffering, take the time out of their day to provide support to their fellow human beings.



Jeanne said...


Having been diagnosed with endometriosis in 1992, after 10 years of suffering, only to find zero in my local library on the condition...

I know what it was like pre-Internet to desperately want information and not be able to find it. When the librarian and I as a team could find ZERO on my condition, I knew I was in trouble. How times have changed!

So you are right that there are a great many resources available online that were not available a few years back. We really are fortunate that so much information and support is available now for so many conditions.

Yes, there are an enormous number of chronically ill patients connected online. It's really quite remarkable.

Yes, the world can be nasty but, yes, the Internet can be a wonderful place to obtain (and give) support.

Of course, not all Internet resources are created equal (or what they seem) and patients always need to be cautious.

Unfortunately, there are companies and individuals who prey on sick patients and the Internet can be a breeding ground for them.

Fortunately, though, there are many fantastic, caring, wonderful people online who help fellow patients and themselves in inspirational ways.

I know that the last couple of years must seem like forever to you going through what you've described. I also know how many years it has taken me to come to terms with my situation (many... and that some days I still do struggle with the "why?" questions)...

I also know that you work hard to find a positive out of a negative. This is huge and this attitude is a huge asset to you moving forward!!

I know that you must be incredibly frustrated and probably a bit mystified as to how to turn an experience that has been so negative into a positive.

How can one best turn a negative into a positive?

I think that you may have answered your own question in your last paragraph here.

After decades of living with chronic illnesses... stemming back to when I first became chronically ill at age 13, the answer for me on how to take all of the negatives and flip them around always points back to what you referred to: helping other human beings.

Without waxing too philosophical, I'll just refer you back to your own conclusion to this post where you express appreciation to those who help others despite their suffering.

You not only have the compassion and heart to make you a wonderful help to others but you have your training as a nurse which can only add to your ability to support other patients.

I don't mean in a medical sense.

Obviously you can't put yourself on the line for anything liability-wise and you wouldn't want to do that for other reasons anyway.

What I'm trying to say is that your life experience having worked as a nurse for two decades is part of who you are & always will be. No one can take that away from you. Your experience feeds into how you think and feel about health-related matters.

Your experience as a nurse is with you no matter where you go or what you do. It's in your memory bank as you write your blog, for example. The fact that you can't return to your job as a nurse does not mean your years as a nurse were a waste by any stretch of the imagination.

Maybe you will find what I have found (and so many of my online friends, health bloggers or not, have found)... that you can adapt and find new purpose by helping others (such as online).

This may not take the sting out of the financial blows you've been dealt, of course. However, if you're looking for some sort of "purpose" to help you get through all of this pain, you may find that it may well be that you are meant to help others.

I'm not sure if this is helpful or not. I know how long it took for me to figure this "outlook" out on my own.

Take care,


P.S. Thoroughly enjoyed chatting with you on twitter today!

lost butterfly said...

Awesome reply, very much appreciated. I was sort of just stuck, unable to move forward. I suppose under the surface, I know what I need to do, I just wasn't ready to accept it yet. You have changed my life and my outlook, prompting me out of inertia!
Thank you!

Jeanne said...


Everyone gets stuck sometimes... especially when faced with the kind of challenges associated with situations like what you're going through.

It takes time to accept what's happening and embrace it/adapt to it rather than angrily fight it (or hope that ignoring it will make it go away).

Acceptance is a big step. While I certainly take no credit for it (!), I'm glad you feel like you're gearing up to move forward. I know the "stuck" phase can be pretty miserable.

You have nothing to thank me for. Just be gentle with yourself.