Friday, September 12, 2008

Friendship and Invisible Illness Awareness Week

This is Invisible Illness Awareness Week, and Lisa Copen from has put together a wonderful program of conferences on many topics pertaining to living with chronic illness and thriving. Today on , National Invisible Chronic Illness Awareness Week Laurie Edwards will be speaking on "Friendship, Dating and Marriage: Can It all Come Together When You Are Young And Chronically Ill?".

This talk is especially poignant to me this week, as I have recently been let down by a long time friend. This person has been in my life for over 30 years, from before I knew about my illnesses, through first becoming sick, to becoming disabled to the current day. I really thought he understood what I go through, he has certainly seen enough of it first hand. But somehow he still just doesn't get what it is like to live with chronic illness, what types of things we face day to day that healthy people don't. He has had some of his own stress lately, and I attributed his change in attitude to what he was going through, but the end result has been his pulling away. I feel hurt and completely bewildered by his actions. I don't expect too much from him, or ask for a lot of support, but he seems to simply resent that he can't make it all better, despite the fact that I have never asked, wanted or expected him to. So instead of just being my friend, he feels he needs to "fix" me or leave. We are still in contact, but the friendship has been altered forever and my trust is shattered.

I wonder if any of you have been through something similar with a close friend, a spouse or a family member I think most of us don't expect the general public or even passing acquaintances to "get it", but we hope the ones who are closest to us will. I would like to hear your thoughts and experiences with this, if you feel you can share them.

I look forward to listening to Laurie's talk today and hearing what she has to say on the subject. I encourage all of you to go to the website and listen to any or all of the talks from this week. They are being archived on Blogtalkradio so you can listen at your convenience, and even save them to listen to again. I have found so many of the talks and speakers to be so helpful to me, and I hope you will find the same for yourself.

I found a wonderful quote the other day, which to me sums up what I look for in a friend. I want to close this post with it in the hopes that it may provide comfort to you as it has me.

"When we honestly ask which persons in our lives mean the most to us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not-knowing, not curing, not-healing and face with us the reality of our powerlessness. . .makes it clear that whatever happens in the external world, being present to each other is what really matters." -Henri J. M. Nouwen


Jeanne said...


Your blog is off to a great start! I just wanted to pop in and say hello.

I'm glad you recently visited my blog. By appearing as a recent visitor on my blog, I was then able to contact you on and then also find your new blog.

As far as the content of this particular post, first of all I'm really sorry for the loss you have experienced with this altered relationship you've described. It sounds very painful for you.

Unfortunately, what you’ve described is an all-too-common reaction for many to not being able to "fix" someone else's chronic illness(es)! This is actually very common. In my support group, there is a high divorce rate. In large part, though not in all cases, these divorces have chronic illness as a major causative factor and/or simply a strain on the marriage even if the marriage survives.

Unless the spouse didn't know of the diagnosis prior to the marriage (which sometimes happens but is not typical in my support group… I’d say most patients in my group are diagnosed prior to getting married), many spouses DO know about the illnesses going in but eventually reach a point where they just don't know how to handle it anymore.

Maybe they feel helpless and can't handle feeling like that anymore. Perhaps it hurts them too much to watch the suffering they are witnessing day in and day out. There are other scenarios too.

The common thread often seems to be a feeling of helplessness, frustration, and inability to "make things better".

Even if we, as chronically ill patients, never ask others to "fix it", they often feel that pressure anyway. It's really quite common.

Even in the most supportive relationships and marriages, it is quite common for the "support person" to experience phases where the feelings of helplessness become quite overwhelming. So try to take some comfort that many people go through similar experiences and can relate to your pain in some way.

Great post! Your blog is off to a wonderful start. Feel free to keep visiting my blog. We talk about numerous chronic illnesses there... far more than just endometriosis.

I have the unfortunate "honor" of having firsthand experience with a large number of chronic illnesses and I'm very ill. The good news is that this gives me insights and information when writing my blog that can help people with multiple chronic illnesses. I believe it gives me empathy for other patients as well.

While my blog spends lots of time on endometriosis… we talk about many other illnesses like fibromyalgia, interstitial cystitis, irritable bowel syndrome, multiple chemical sensitivities, etc. Since I have all of the above, I'm able to provide some suggestions to readers that come from my own personal experiences.

Welcome to the blogging world! :)


Jeanne said...


I forgot to mention that I just loved your quote on this post. I have already passed it along to a friend who is going through a very tough time. Thank you for this great find. (I'm a big "quote lover" myself and often include quotes on my blog).


Maureen Hayes said...


Thanks so much for your insight into what I know is a problem and at times a frustration to all of us. I appreciated your thoughtful response, it helps me to see my friend's point of view and to realize that he may feel pressure he puts on himself. I am still new at blogging, but have tried to let people know about your wonderful blog. I don't know how to post a link yet, but I included your full URL, so people can find you.

I have subscribed for regular updates to your blog and I look forward to keeping in touch with you regularly.


Jeanne said...


No problem! Thanks for telling people about my blog. I appreciate it. Hopefully I can help you get some visibility too!

Below are the steps to make a hyperlink appear in your post:

1) Type the link’s address
2) Highlight the address and copy the link (just press CTL-C to copy)
3) Click the thing that looks like an alligator (to the right of the italic mark and the left of the quotation mark above where you write your post)
4) Click “close” to the information bar window that pops up
5) Right click the yellow bar at the very top of your screen to do a “temporary allow scripts” option
6) Click on “temporarily allow scripted options”
7) Click on “alligator" again
8) Paste the URL address (website address) you had copied earlier into the window that pops up asking for the website address. (It’ll need http:// at the beginning of it, I think, to work)

It sounds harder than it looks. I'm just into giving detailed instructions.

Thank you for subscribing to my blog. I just set up the RSS feed for that recently so you may well be my first subscriber! :)

I look forward to keeping in touch with you too.


P.S. In addition to several illnesses in common, I see that we picked the same BlogSpot pink and blue template for our blogs!