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For the chronically ill, life can be a long, drawn-out solitary affair. Over time, well meaning friends and relatives can drift away. The people you used to see in the stores, the bank, are no longer part of your life if you're too sick to leave your house.
Someone made the observation to me once that people are at their best during a crisis. If you're very sick for a short time some folks will be right there for you. But when something drags on ... Especially if it drags on for years ... Something like, say, Chronic Fatigue Syndrome ...
Everything they knew to say has been said. Everything they knew to do has been done. Your CFS is, in a sense, no longer an upset to the status quo like an acute illness would be. Your CFS now IS the status quo.
They have gotten used to it. What they don't understand is, you have not. You will never get used to it.
And what is old hat and part of the furniture for them is not a routine part of your day no matter how long you've been sick. You are no more "used to" the limitations and loneliness than you were three years ago. Ten years ago. Twenty-five years ago.
And even the nicest of chronically ill people will have times of fury over the fact that very few seem to bat an eye over the loss of their life. People who could do something to ease the grimness of any given day, have long since stopped. And we wonder, "With friends like these, who needs strangers?"
When I was healthy I was very active. I did a lot for the people I was involved with. Did it because I loved to make a difference. Did it because I wanted to. But after I got Chronic Fatigue Syndrome I was astonished to discover that it wasn't mutual. All these people I'd made a difference for — none of them were interested in doing that for me.
If I think about it for very long, an incredulous anger wells up inside me. So I prefer not to think about it much. But before my recovery began, when my days were spent in bed or in a chair by a window, you can bet this weighed heavily on me.
When I began to recover and made faltering outward steps, there were no celebrations, no ticker tape parades, welcoming me back to planet earth. No one from that old life I'd lost came to visit me. No one invited me out for lunch. No one suggested going for coffee or to the beach.
No one.
These were all conscientious intelligent people. I'd still have to say their affection in the past for me had been genuine. What to make of this?
It seems to just be something that happens. Healthy people have no inkling of what it's like for a person who is chronically ill. The emptiness. The alone-ness. I did it too back when I was healthy and didn't know any better.
A short visit, a small gift, a phone call or note, can make such a difference when absolutely none of these things are going on.
I'm writing for the chronically ill who go through this, to say, you are not alone. There isn't something wrong with you if you get angry and your whole view of life has been turned upside down by illness and by being dismissed.
And I'm writing this for the healthy ones who have been oblivious up till now, but who want to make a difference. Go in and find your sick friend. Don't expect them to come out and find you.
The playing field is NOT level despite what you may think you see. The onus is on you, if you care enough.
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Four years ago, I found treatment that worked for me, and now I am making a comeback.
http://www.ncubator.ca and http://ncubator.ca/blogger
Edited by Alison Stanton
Add a Comment29 Comments
Jody: Your words provoked such emotion in me; I have tears streaming down my face - thank you - I find it important to feel anger and sadness...housebound and mostly bedridden after 20 years of symptoms, my group of friends faded away long ago)...
With a successful high-profile career I was very much a people-person "before" and the almost total isolation I have experienced for over a decade would most assuredly be unimaginable for most people; however, I have grown so much emotionally - when one has no one else to rely on, self-sufficiency is imperative, and actually quite empowering - ironic, for sure.
The worst part for me is realizing how much antipathy society feels toward the most vulnerable among us - I can live with it myself because I feel that my spirit is strong enough to sustain me, but when I think of all of the suffering in such a harsh environment, well, my heart just aches.
Even though I would love to go outside and see the deer in my yard or go for a swim or go out for a nice meal, I fantasize mostly about social issues and trying to make a difference in the lives of those even less fortunate.
I must go rest now, but I'm proud that I'm not the kind of person who would drop another human being because they've 'inconvenienced' me with their illness. That acknowledgement makes the fatigue and pain worth it for me - more irony I suppose.
I have a feeling people in this forum would understand that.
Thank you...
Gloria
July 28, 2011 - 2:34pmThis Comment
Hi Gloria,
It's true that the most vulnerable are often treated with the least care and concern. But if and when we are well, we will never forget what we have seen. And we will never be indifferent to someone in pain and bad health who needs to be seen and heard.
(Edited to add -- I posted this in the wrong spot, meant it to go under Gloria's post)
July 31, 2011 - 1:27pmThis Comment
Gloria,
July 29, 2011 - 4:20pmWhen they do find a way to cure us, watch out world! There are millions of us with M.E. have had plenty of time to think about how we would better the world while being sick, and we are primed to go out and make a difference if/when we get healthy again! We know how the system needs to be changed, we know how society treats women with M.E., and we have grown from our negative experiences. I pray regularly for God to help me survive this so I can help others. We will have our day someday!
Heide
http://hysterical-woman.tumblr.com
This Comment
I really appreciate this article, and I appreciate how you validate your/our feelings of pain and loneliness. I have tried to write about it on my blog, but it comes out sounding a lot angrier! :D I think working through a 12 Step program, like another commenter said, is a valuable tool for people with chronic illness. I do Codependents Anonymous, which helps me face my issues with relationships. I read something the other day that said that going through recovery is basically a system for learning how to be healthy in how we deal with grief. There is a lot of grief involved when we first get sick, and then it changes to a different kind of grieving later on. You don't have to be a raging alcoholic to benefit from the 12 Steps. You can substitute "chocolate" or "yelling at my kids" or "shopping too much" or any not so healthy coping method, in place of "alcohol" in any of their literature. There is a lot of stigma about addiction, so I just want to put that out there... this stuff really has brought me a lot of peace in so many areas of my life. I agree with the other poster that learning to accept ourselves and our situation is a key to feeling better. Not only are our friends in denial, but sometimes we are too. Beyond that, it is important to learn better communication skills, and find new ways to reach out socially. One thing I identified recently is that it isn't always other people... I am often too tired to have visitors, and no matter how upset and angry that makes me, it isn't anyone else's fault. It was a big step for me, because in the past I blamed others too much.
That said, I don't know if I will ever get over the fact that nobody has ever sent me a "Get Well" card or gift. Not. Once. In almost 7 years! I usually post on Facebook when I'm having a flare up. It isn't like people don't know I'm going through a rough patch. I'm kind of a vocal person when it comes to pain! I'm trying to get over it, but that is a tough one.
On the bright side, as the years pass, and as some friends go through their own health issues, I feel honored when they turn to me when they realize how difficult chronic pain is, or how tough it is to navigate the medical system, etc. As we get older and they are realizing their bodies aren't invincible, their compassion seems to grow. It seems like they gain a whole new respect for me. There's still room for hope. Thanks again for your article.
-Heide
July 26, 2011 - 11:50pmhttp://hysterical-woman.tumblr.com
This Comment
Hi Heide,
There is so much grief. Overwhelming. Having that go unacknowledged just adds more grief.
I have noticed that when people get sick, they tend to gravitate to some of us because they realize we've been through something deep and life-transforming, and we can understand their new state better than the healthy friends they had preferred before. And then some of what we've been through can actually become a valuable asset for others. Because we really know how huge sickness and pain can be.
July 31, 2011 - 1:23pmThis Comment
Well said. It helps so much to know that you're not the only one who goes through this!
The other thing I find is that when I do try to meet new ppl to socialize with, they tend to be 'fixers' looking for a project. It's soooooooooo obnoxious, as well as incredibly demoralizing to find out that it was their need for a project that they were interested in, not YOU. And guess what? If 300 000 patients haven't figured out how to 'fix' this, what makes the fixers think that they can?
Ugh.
July 22, 2011 - 6:12pmThis Comment
Hi Anonymous,
Fixers get awfully disappointed. I am a fixer by nature but I have learned that some things don't fix so easily and it's equally important to simply spend time with someone who is ill and lonely, whether I can fix them or not. Because the loneliness needs fixing too.
July 31, 2011 - 1:19pmThis Comment
Right ON, Jody, once again! I have FINALLY begun to feel a bit closer (still quite challenged, though!) to human again in the last year, myself (16 years later)... I can only think it's due in PART to the person I was dating and a then-related circle of friends who helped me remember to LIVE and be fearless and try new things again (even things my doctors would not approve of)! That, and being able to take real/raw food vitamins (I could never take regular vitamins, due to reactions)... Yes, no ticker-tape parade... so we have to throw the ticker tape and cheer for one another, at least!;) Much love and continued healing your way...! ;)
July 20, 2011 - 10:12pm--Helene
This Comment
Hi Helene,
I'm so glad to hear that you are doing better and that life is more satisfying.
One huge ticker tape in the future for all of us. And if nobody else wants to cheer with us, we will cheer like crazy for each other. And also continue to remember those of us are still so sick and isolated. We will never forget!
July 31, 2011 - 1:18pmThis Comment
Wow again! Thank you! Definitely had me shedding a couple of tears. In recent years, aside from the fact that I'm too tired to even bathe, the isolation is crippling. I'm a people person, I love company, I love being involved with things, but usually if I say I'm not up to it at the moment, people seem to take that as a "I don't want to" or think that I don't care, which couldn't be further from the truth.
I've posted this to my facebook page in the hope that some will read it, and try to get it into their heads I am not my illness, it is a part of me, but it is not who I am.
July 17, 2011 - 1:48amThis Comment