Just when I thought I didn’t have another post in me…
😉
Lately I have come across several blogs which dealt, in part, with having lost friends as a result of becoming chronically ill. It got the mental wheels turning again, words putting themselves together in my head and demanding to come out. After 20+ years of living with a slowly worsening chronic illness, I can say I’ve certainly dealt with the effects of it on friendships.
A long time ago, in a book I’ve purchased many times because I keep giving it away to others, I read something I’ve never forgotten. The book is Sick and Tired of Feeling Sick and Tired – Living with Invisible Chronic Illness by Paul J. Donoghue, Ph.D. and Mary E. Siegel, Ph.D., both of whom have invisible chronic illnesses. The part I’ve never forgotten? It went something like this;
When you’re sick, people expect you to do one of two things: either get well or die. When you don’t do either one, they don’t know how to handle it.
In my experience, some people head for the hills quickly. Some really try to keep the friendship going, but eventually fade away as it becomes apparent that common ground was based more on activities than on each other as individuals – when we can’t keep up the same activities, time together can become awkward. Some become temporary fixers – staying with us as long as we’re willing to try every idea they bring to us and when those don’t work, or we finally say “Enough!” they shake their heads and begin to blame us for remaining ill. But, sometimes, whether someone newly met or someone who was there in our before life, a precious – jeweled treasure of a soul refuses to define a friendship by surface things.
I’ve ached and shed many tears over the might-have-been, wish-I-could aspects of being ill. When it’s to do with an activity it’s bad; when it’s about people being in – or opting out – of my life it has often been deeply painful. From the distance of 20+ years of experience, though, I can see that the reactions of others to my illness have more to do with them than with me.
Those who head for the hills quickly may be running away, not from me, but from the purely human fear of facing the fact that life can change in the blink of an eye. Mortality is a tough thing to look in the eye. I know. It’s much easier to forgive their disappearance now that I can see that it’s about them – not me.
Those who fade away when shared activities can no longer be shared can’t be blamed either. There evidently wasn’t a deeper connection – it was more a case of enjoyable acquaintances than the deeper thing I think of as friendship. Perhaps I thought there was more, but it is evident there wasn’t – so it’s merely a case of misinterpretation of the relationship. No blame in that; sadness maybe – but not blame.
The reactions I’ve found the most difficult to handle are the temporary fixers. They mean well, they really do. But in the end, they’re afraid. They don’t appear to be afraid, in fact, they usually appear to be certain, even aggressive, but I believe they are terrified even though they don’t realize it. Having enjoyed good health or recovery from ill health, they cannot come to terms with the fact that sometimes there is no cure, no treatment that makes us as we once were, let alone that we’ve come to terms with it. They often grow angry with us as they clobber us with their insistent “If you’d only do [fill in the cure/treatment of the day] you’d be well! You must want to be sick!” Oh, how that hurts! Even from total strangers! Yet, once again, I see fear beneath. If we’re sick and can’t be fixed, it might happen to them! Now that I can see that, it’s much easier to be understanding and the pain diminishes greatly.
And then there are those rare jewels. Ah, what treasure! Those precious few, whether old friends or new, who accept us exactly as we are. I’ve had to say farewell to some who were called home to God. My children were even overheard to say at one point “Why is it that all Mom’s friends die?” Oh, how I’ve ached for the loss of those dear friends – and how I love the memories and lessons they left for me!
Of those who have never known me healthy, but who offered true friendship, their only question has been “Will you help me understand what you need?” They are/were precious few indeed, but all the more precious for being so few.
And one, just one, who has known me for decades –well and ill – and who has never gone away even as she pursues her own life and enjoys her circle of active friends (as she should!) We aren’t in touch often, but she never lets me feel forgotten. She has – quite astonishingly – continued to be a loving presence in my life. Though I know she prays for me to be well; her prayer is for me, not because I have let her down by being sick.
No, I don’t have a circle of friends like many people have. Sometimes that hurts because I long for some idealized vision of normal and because I foolishly fall into fears of a future that hasn’t even come. But, I wouldn’t give up the lessons of seeing clearly and learning both to forgive and to treasure!
Normal ain’t all it’s cracked up to be 😉
Peace.
What a great post about friendship. Thanks.
Thank you for coming by and leaving such a nice comment.
Peace.
I have experienced losing friendships since becoming ill and have finally learnt that it’s not a reflection on me. I have learnt to accept that any friendship can go in different directions and therefore treasure the friendships that I do have!! I will always do anything for anyone and drop everything if a friend needs something. That may sometimes be to my detriment but I pride myself on always being there as much as I can whenever I can.
“True friends are like stars, you can’t always see them but you know they’re always there.”
Keep smiling 🙂
Thank you for your time and energy in commenting – you’ve got it right in my opinion, treasuring what we do have!
I’m also learning to take the time, even if it’s just a deep breath to discern whether what I’m being asked for is need or want (an earlier post on offering/giving got me more aware of that) so that when there is real need, I have what it takes to help.
Your quote is very apt!
Many thanks.
Peace.
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[…] words that so many of us feel in our hearts and lives from being ill. Thank you for sharing your insight, it is healing and timely! and I love the new look to the page, and the pretty calming picture of the bridge.
Thank you for your kind thoughts ruthieann. Sharing insights on things that many of us encounter is probably a central reason why so many of us blog. It certainly helps me to do better in my life.
I’m glad you like the new look to the page, it was getting hard for me to read – let alone ask anyone else to – and the bridge picture seems very symbolic to me. I can’t take credit for creating it, it’s a theme offered on WordPress, but I’m glad I saw it.
Peace.
I feel sorry for those “Friends” that have gone by the wayside over the years. […] Thank you for being you and being a part of my life.
You are so unfailingly in my corner – I don’t know how I got so lucky 🙂 I only hope those who couldn’t stay are learning whatever God would have them learn – something I hope for us all.
I kept part of your message private for me to treasure alone but I want to say to you that I’m glad you recognized yourself in this post and I thank you for being who you are and part of my life!
Peace.
I think you hit the proverbial nail on the head. When they look at us, they see the potential that it could one day be them.
I also think that since they have no frame-of-reference they just are not able to understand and after a while they move on.
And then, there is the societal ideology that we should all be healthy, young, vibrant, and well. It has even seeped into many theological denominations.
In the end, I think treasuring those that are in our lives, whether through the web or in our phycical arena, is what adds depth, dimension and richness to our lives.
P. S. Maybe you and I should start the Decades ME/CFS club! 😉
Thank you, Dominique! You always offer valuable insights and I appreciate your time in adding to this entry. I am glad you added the view of societal ideology and agree that it plays a huge role in how others react to us – such a narrow, unrealistic, ideology that in the end does a disservice to all, well or ill, young or old.
I agree that treasuring those in our lives, whatever arena is open to us, is key to our own happiness.
And, you’ve got my mental wheels turning about the Decades thing… 😉
Peace.
Thank you for your comments on friendship. I may have been one of the posts you have recently read about friendship!
Today I am going to find the book you recommended. And by the way, you mentioned that you were surprised when you had one more post in you!! Some of us who are traveling a similar route of having been ill for more than a decade are interested in hearing how you still live a “quality” life. It’s the small day to day things of more than surviving that I want to hear about and with your faith I know you have much to offer! I would even like to hear your meditations as you practice the Divine Hours!
I just read your post – wonderful! I recommend that anyone reading this follow Gayle’s link and read it.
I had not realized, Gayle, that I stole your theme! I knew I saw that bridge somewhere and found it peaceful and meaningful, but did not mean to swipe your idea. Feel free to let me know if you’d rather not be theme twins – I won’t be hurt, I promise.
Your comments here are so kind and I am happy if you sometimes find something worthwhile in what I write – anything good in it is by His grace!
Since you expressed an interest, I will share here one thing that strikes me over and over as I read the Psalms in the Liturgy of the Hours – the Psalms contain every human emotion there is, and both sides of the conversation with God always assuring me that He’s here, unchanging, never going away, and always wanting us to come closer. It seems no matter what’s going on in my life, there is the Psalm I need, popping up exactly when I needed it. Whether it’s a single word, a line, or more, there it is as though waiting for me.
Peace.
I actually smiled when I saw that we shared the same theme! I figured that must say something about what we are both drawn to! When I began writing again in January I thought I should try a new theme but for some reason still felt drawn to this one.
I purchased Phyllis Tickle Books, The Divine Hours and I hope that I will begin the consistent discipline of stopping several times a day to read her daily selections. What do you use as you practice the Liturgy of the Hours?
Oh, you are so sweet in your comments about our shared theme 🙂 Thank you, as I do really like this one a lot!
Regarding the Liturgy of the Hours, after some much-valued help by my Oblate mentor, I selected Christian Prayer as one I could follow and use the St. Joseph’s Guide for an easy reference. My edition has hymns with music in it so I can sound out those with which I’m unfamiliar and at least a sampling for all the Offices. It also has some lovely poetry in the back. I bought it by clicking on the books link on the Divine Office site I’ve got in my links and then purchased through Amazon. I figured if the people who work so hard to make it accessible could make a penny or two from my purchase, all the better.
I would think the guidelines for an Oblate would apply to any lay person – an Oblate tries to incorporate the Divine Office according to their station in life, so if this rank beginner might advise, it would be to be gentle with yourself – better to remain faithful to a small part than undertake too much and drop it. Or so I think at this point 😉 As my mentor put it when I commented on feeling overwhelmed by fog-brain and making mistakes – “He gets it.”
Peace.
Dealing with the many friends along these past two decades has been overwhelming at times. Can remember in early years, attending support groups that were not truly supportive. Through no particular person’s action or words. It was so difficult when in the dark as to what was happening to our mind (brains) and bodies. It was a meeting that consisted of looking at symptoms and discussing them. Had to leave as it was draining the little energy left. Once diagnosis was made then my world became my team of healthcare providers who fortunately had a holistic perspective., were caring and knew me in my healthy years. For most of that decade, I saw the same ‘helpers’ and busied myself with that routine and research. Then another phase, when I realized it was damage control and how to find quality in a smaller space. I chose to distance myself from old friends as it became too painful to be left behind. That is how I coped. Even now, I join groups that deal with holistic help, some interests that I still enjoy. But when there are social meet ups or gatherings it is same as before except that I have not identified myself, yet as having a chronic illness. Every one has their problems so I make an effort to meet new people based on our similarities not diagnoses. It will be interesting to see where this ‘new’ approach takes me. So far, it has given me things to look forward to, and as the weather has curtailed so many activities, it is normal to cancel. To me, the time that I have is precious and I long to be conscious of that fact and make quality choices. So my friendships, the new ones, yet to be determined duration. The few, cherished longterm ones are in distant states and I can feel reciprocal and less demanded apon. It is more of freeflow of our messages and updates on our lives and what we know and hope for……does it make sense that it would evolve to this as one deals with an ongoing illness that does not consider any plans I make. _Susan
“does it make sense that it would evolve to this as one deals with an ongoing illness that does not consider any plans I make” It seems to me that you’ve arrived at the thing we all strive for – the right fit at the right time. I see in your journey that evolution that happens in relationships, but I see also a woman who does not quit working at a way to connect that fits where she is at the time. That sounds like balance to me.
Thank you for sharing your journey of friends, contacts, helpers, acquaintances here. By seeing experiences common to many – and maybe to all – I think we grow stronger, less isolated, and less uncertain of ourselves and our choices. By focusing on the similarities between people, you again set an example for us all. Thank you for using your strength and your precious time to let those who read this spend some time in your world.
Peace.
Very important message for those with chronic illness. Oh my it brought on the tears as many things do these days. lol
I have thought that I probably don’t know enough people to come to my funeral should I not make it.
Oh, Linda…have you been peeking into my own fearful self? I was thinking about that only the other day, and then the obvious thought occurred, why should I care? It’s not like I’ll be there! 😉
I am so glad you came and spent precious time to leave your comment – to share the tears we all shed sometimes. We’ll all “make it” exactly as long as we are meant to, not one minute more and not one minute less. It’s our job to make the most of whatever length of time we have, to pursue who we are meant to be in this life as we know it, to let others learn the gift of being givers when we must ask for help. All aspects have their role to play, all of it has value even when we are blinded by our tears and fears and cannot see it.
Even the times we sit stubbornly in the dust with our dirty, tear-streaked faces and understand nothing…there is value. Sometimes we just have to ask someone else to remind us of it. You are not alone.
Peace.
Lovely to come across this post. You give expression to so much that feels a part of my own experience.
You are very kind both to visit and to trouble to leave such a lovely comment for me to find.
I’m only sorry that you have difficult times. I wish you –
Peace.