Monday, April 29, 2013

There Are Days

I was telling someone just the other day that having Rheumatoid Arthritis has taught me more about compassion than anything else ever has. Before facing my own chronic illness, I didn't really understand what it was like to endure this kind of thing. "So, what is it really like living with a chronic illness?" was the follow-up question, and I wasn't at all sure how to explain it. In the time since, I've pondered it, and this is the closest I can come.

There are days...

There are days when I'm exhausted in every imaginable way. The pain, be it mental, physical, etc., of a chronic illness is only multiplied by the unrelenting constancy of it.

There are days when the illness is still there--it's ALWAYS there--but it seems less overwhelming somehow, days when I'm dealing with things pretty well and I feel like I'm gonna beat this thing eventually.

There are days when I dread sleep because the pain doesn't leave me even then--I dream every night of being in pain, and I wake up every bit as exhausted as I was before.

There are days when the prospect of facing another day of pain--there aren't ever any that are free of it--is almost too daunting, and I have to work to get myself out of bed.

There are days when I think about spending the next forty or fifty years this way and I'm not sure I can do it. I'm in that difficult place with chronic illness where the right treatment hasn't been found. I know it will get better. I know that. I find comfort in that. But when someone is in the middle of suffering, especially suffering that is so unrelenting, the reality of "now" and the pain of the moment is sometimes all a person, weary from constant battle, can truly process. And there are people who don't have that promise, who are facing the rest of their lives without relief.

There are days that are good. My spirits are up. My strength is up. And I'm feeling good about life.

There are days when I'm faking it, when the smile is forced and the cheerfulness is an act. Sometimes, it's because I just don't want to talk about it or defend myself to people who insist that a frown, a single word of complaint, any physical concession to pain, etc., means I'm a failure or not being strong enough or not dealing with my illness properly. Sometimes, it's because I'm trying really hard to have a better day.

There are days when people are harder to endure than the pain. People toss me dirty looks because they're stuck behind me on the grocery store aisle and my labored movements are slowing them down. People mutter under their breaths when my hands give out and I drop something in the check out lane and everyone behind me has to move to another one while the mess is cleaned up. People take the time and effort to send insulting and belittling emails because, somehow or another, they believe it would be a helpful or appropriate thing to do. People tell me that I have a chronic illness because I must be a terrible person who somehow deserves it, or that if I really wanted the illness to go away, it would--as if having an illness is irrefutable proof of some kind of personal failing. There are days when people cause far more pain than any illness ever could.

There are days when people are my saving grace. People smile empathetically as I struggle to run errands. People assure me "it's okay" when I drop things or can't carry things, and do what they can to help. People take the time and effort to offer words of encouragement, however small. People support me through this illness without judgement or dismissal or hateful words. There are days when I am absolutely in awe of the kindness that people are capable of.

I think it's hard to understand what a chronic illness is like without actually having one. And when I'm asked what a person can do to help another who is struggling with chronic illness, the only thing I can really say is, "Be compassionate and err on the side of kindness, because there are days..."


Jewel said...

Oh, Sarah, I am crying as I read this.
My heart aches for you, and I feel ashamed and angry and hurt that people would behave that way. I am, however, grateful that you are also able to have good people in your life--people who uplift and try to help and treat you like the amazing, strong, wonderful person that you are.
Please, PLEASE know that I think of you all the time--and I'm praying for you just as often.
Hope today is a good day.

Shantel said...

I had a couple in my ward in Glendale, that made fun of me- to my face. This is as grown ups and after we had children. I was stunned. I asked her once if this was Jr. High because I was really confused. It is amazing what people will do and say.
She follows your blog, so I wont use her name. but gosh...Slap my face and call me grandma- wont people wont do.
(don't really hit me)

Jennifer Wolf said...

Thanks for posting this. It helps me understand what my husband is going through with MS. Sometimes I forget that it's always there.

Love and prayers for you!

Marta O. Smith said...

This may seem an odd thing to say, but your RA can be a blessing to others, because you have a gift with words. So many people with chronic illness can't express their feelings the way you can. It can help just to know that somebody understands. You may also soften a few hearts, and make people a little more kind.

kvhawker said...

Thank you for your open thoughts on your condition, attitude and feelings. It helps me and others to understand if only a little more about you and so many others that live with such trials. It is hard to imagine people going out of their way to inflict more pain on you or anyone!
You are right, kindness is the way! If we can all be just a little more caring, compassionate and much better everyone would be! Keep your chin up! Love to you and your family for helping you!

Stephanie Black said...

Sarah, I really appreciate your candor about what you're going through and your beautiful way of expressing it. On both the good and the bad days, you're awesome.

Terry W. Ervin II said...

Moving forward with hope. What else can be done. There will always be folks who are self-centered and rude. Don't know why they're that way, but don't let them get to you.

I know, some days it's far easier to say than it is to do!

Jodee said...

Amen. RA ANKYLOSING SPONDYLITIS. I have learned over the past 19 years just how hard some people will work to produce a smile to mask the pain. Sometimes it's for the comfort of others and sometimes it's a last grasp at hope, a valiant attempt to stave off surrender to despair. You are an amazing woman and an inspiration. If you every need to talk treatment options we've been there, you know how to reach me.
P.S. I was once told that there is no such thing as celiac disease because the scriptures say wheat is for man. : )

The LaLa said...

Sarah, my mother lived with RA for many years and we learned compassion literally at her hands and feet, rubbing them after a long day. Your children and grandchildren will learn it from you. Soft hugs to you, sweet lady. Donna C.

Cheri Chesley said...

I am embarrassed that there are people out there so unfeeling as to not only give you dirty looks or mutter behind your back but will take the time to email you just to insult or belittle you. I'm sorry that you have to deal with that on top of dealing with your RA. I'm thankful that you do have those in your life who support and care for you and I really hope they find a treatment system that works for you soon.

Donna K. Weaver said...

Oh, Sarah. One thing my hubby hasn't had to deal with is those hateful people. Funny how I like to think that those horrible caricatures of Christians are just that: caricatures. And then it turns out they're real.


Julie Coulter Bellon said...

This made me cry. So beautifully said. Thank you and I pray there will be more good days ahead for you than there ever are bad ones. *hugs*

Mailee and Spencer Pyper said...

I think you are being very brave (through all the variety of days that come with a chronic illness). It's very hard, and very frightening. Being chronically ill also seems to be a great conduit for judgement, of all varieties, from people who just don't understand because chronic illness is so far out of their realm of life experience they can't even fathom it. I wish you the best. Here's to today being one of those awesome days!

Shanda Cottam said...

Sarah, Thank you for sharing yourself with us so honestly, and for the strength you show by openly discussing your struggles. I am grateful you have so many special people in your life to offer you support and compassion. I pity those who are passing judgement on you. Someday they will need support and compassion, and because of their mistreatment of others it will probably be in short supply.

You and your family are in my prayers. *hugs*

Nikki said...

Beautifully written. Thank you for sharing your insights and real feelings. I reckon we all have a lot to be reminded of and embrace any moment we have of withholding judgement on anyone, and instead, reach out with compassion. ♥


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