Tuesday, March 26, 2013

When the Going Gets Tough for the Chronically Ill

We all know the saying:
When the going gets tough, the tough get going.
But when you live with chronic illness, I think a more fitting revision might be:
When the going gets tougher, the tough disappear.
At least that's how it seems to me, especially when I look back at my own blog archive from the last year.  When I started Hepatitis C treatment in February 2012, things got really tough.  So I compensated by temporarily letting go of a lot of the things I love doing, like blogging and container gardening, to focus on my health.

Thing is, I've noticed that this happens to my chronically awesome friends too.  I visited the blogs of a few sick friends the other day and saw that they too have been absent.  From the few posts one friend was able to publish, I learned that her life is undergoing several major upheavals all at once.  I saw that she is posting as often as she can.  As much as I want her to keep sharing her story, I know her capacity to deal with life right now is overtaxed and her blogging must take a back seat.

The truth is, when you live with chronic illness, you lose your ability to do a lot of things.  Heck, there are days when I can't properly focus on getting just one thing done!  I often think doing is for healthy people.  Some days just being is all I have the energy to do.

But those of us living with chronic illness already get this.  So why am I writing this post?  Because I'm sad that our voices seem to fade out when things get really bad for us.  Our stories stop being told at the exact moment when the need to talk scream about what is happening is so much greater.  Which makes me frustrated, because when we get quiet, it seems like the healthy people in our lives don't notice that we are getting swallowed up by our tough health battles and could really use their help.

Call me cynical, but the only help I see us sick friends getting is that weekly reminder to church-goers to pray for the sick and elderly. (They still do that, right?) The rest of society is geared towards the able-bodied, so we aren't getting much help there, are we?

But we need much more than prayers.  Our lives are so much better when 1) we have healthy friends and family sharing positive interactions with us on a regular basis and 2) those folks can offer us some support and assistance, or arrange for it, when we really need it.  Unfortunately, too many of us don't have these positive interactions with healthy friends and family.  Even when we are surrounded by healthy people, those folks sometimes chose to tune us out instead of help us out.

We know that the fundamental truth is that it's hard to be sick. And we are faced with another fundamental truth: it's hard for healthy people to truly comprehend what it means to be sick and sometimes it's even hard for healthy people to just be around sick people.

Here is a quote I think pretty much sums up this problem:
People think they know you. They think they know how you’re handling a situation. But the truth is no one knows. No one knows what happens after you leave them, when you’re lying in bed or sitting over your breakfast alone and all you want to do is cry or scream. They don’t know what’s going on inside your head—the mind-numbing cocktail of anger and sadness and guilt. This isn’t their fault. They just don’t know. And so they pretend and they say you’re doing great when you’re really not. And this makes everyone feel better. Everybody but you.
~ William H. Woodwell Jr.

Now I feel bad that I have taken up so much of your time eloquently defining this issue when I don't have a solution to it, at least not yet.  But then again, perhaps the solution comes when we all start talking more about this, rather than letting healthy people go on assuming those of us living with chronic illness are "doing great."  Because let's be really, really honest--even on our "good" days, we aren't anywhere near to "doing great."

My goal is to live life "as well as possible" each and every day I live with chronic illness.

How does chronic illness impair your ability to tell your story? When health battles overwhelm you, do you get the support you need from the healthy people in your life?  What are your ideas on bridging the gap between ourselves and healthy people?

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Rairy said...

I lost a major friend group this year. They labeled me as "inactive" and dumped me from the fb group we used to communicate social events. Sad thing was I was attending more events as I've gotten better recently and this wasnt an organized group with a membership/attendance requirement. They knew I was sick and it didnt matter. Odd considering some of these people had been some of my best supporters emotionally (and in person - the filled the freezer with meals when my father in law died)

Chronic mom said...

I love and relate to what you said about how "just being" is sometimes all we can do. That is truly how it feels sometimes!

Iris Carden said...

I'm one of those who blogs regularly, and then just disappears for periods of time.
I feel guilty about it, but I know everyone who reads my blog understands.
We all have to make choices as to what to spend our limited energy on, and sometimes our own immediate crises are all we can handle.

Yes, we do still pray for the sick at church.

Shannon said...

I'm so happy to see you blogging again Selena. I hope that means you are feeling a bit better too.

Great post! One that really resonates with me. Living so far away from my family, no one really knows what is going on with me on a day to day basis. I hope they don't stress too much over it, but I can't imagine it being that easy on them either. Not knowing how I am "really" doing.

I try to keep in touch via FB and the occasional phone call every month, but I just don't want to feel like every time I talk to them I'm complaining.

Honestly, my health hasn't changed. If anything it has gotten worse. I cope as much as I can. On the bad days I sleep more, when possible. My husband is getting better at coping with my health "moods" too.

Otherwise, I socialize only through online friends. I don't go out anymore but for doc appointments. So my way of dealing with healthy people is kind of to avoid them lol. It just seems easier to do that. I've isolated myself, I know it, and for now.. that's ok.

hayleyeszti said...

This sounds all too true and familiar. I have struggled to get friends and family to understand the everyday struggle I and other chronic sufferers go through, with little success. I just can't seem to get through to the majority of people. Is it that they choose not to think about it too much because it is too much for them to understand or even relate to? Or do they just not care? A quote that often comes to mind when I think about the absence of my close ones, and their support
'Out of sight, Out of mind'

I guess we have to face facts that a lot of people will never know how it feels to be in our position, so how could they even begin to understand what it is we need or want from them?

Take care now, Lots of Love Hayley-Eszti


Anonymous said...

Hi Selena,
Great post! I am often struggling with just being and retreat into myself and find it hard to be bothered with socialising.
However, I have been working at 'going out'I try to go and have fresh air, maybe a meal out or to visit somebody. Now I don't always feel like doing it but most times I enjoy it. I don't overtax myself and it enables me to feel part of the outside world on my terms. The friends I have left mostly understand me which is good.I don't lie and say I'm fine but give a short version of problems. I think you owe it to your friends to be truthful as they share their problems so you should share too.
Take care
Lorna x

Anonymous said...

I feel like this perfectly describes how I feel lately. There's such a big disconnect between how people (especially my family) see me and how I am really am. I try to be a really positive person, and I wonder if that also convinces people that all these "labels" that I have are just that - labels and not my actual lifestyle. They know that I'm chronically ill, that I'm on disability and yet there is no additional thought given as to how this must affect my life. It's just something that is. I keep waiting for people to ask me how I'm going or if they can help me in any way... but most people just want to ask me for medical advice!

I love every single quote here and I feel a little validated right now. So thank you so much for writing this.

- S

Margee said...

Sometimes selena I don't ask, when I should.

Tom K said...

I was looking at Hep. c sites and ran on to your blog. You and others on your site really hit the nail on the head for me. I just started a second go around for tx as I failed on the first by accidentally ODing on lorizipan. I was not aware and my Dr didn't tell me what was coming with the tx. I am unable to work while on treatment and I also have anemia issues and I am scared to death. Yes Christians do pray for the sick and for people who need help. I am certain that I wouldn't be doing as well as I am without their prayer's and a loving God who has taken the mountains in my path and made them hills that I can climb. It takes very special people to climb these hills with you I hope everyone has someone. So I'm in my first week and it has been a little easier than the first time I hope it stays this way.
Did you finish your tx and are you virus free? I hope so as the world needs more like you. If anyone cares I will try to keep posting my progress as I go forward. God bless you all.