Thursday, March 12, 2009

Supporting Those with Chronic Illnesses

Take a deep breath... this is a long one.......

There are days when it's so easy to get really overwhelmed fighting a chronic illness. You're fighting this nasty thing that's overtaking your body and your life, but because it isn't always visible to everyone else, by all appearances things seem fine.

But underneath the surface, you often feel like you're about to break. Like if someone doesn't notice your desperate need for help soon and very soon, you're going to shrivel up and die from all the pain and fatigue.

It's pure torture sometimes.

And I honestly don't know how those of you who are single manage to do it. My heart goes out to you! If you are one of those people, please post a comment. I'm very interested to hear your story and hear how you are able to do this on your own (or do you require a roommate or living with a loved one?). If you haven't already shared your chronic illness story with me, I'd love to hear it... or those of you whose stories I have heard, you may want to post a comment with more details for others to read and be encouraged by, with a link to your blog!

You don't want to always complain so you keep your mouth shut. You don't want to sound like a broken wheel, but if someone doesn't hear about all your pain and issues soon, you feel like you just might burst from having to try to handle it on your own. Those around you who hear you tell your story often, you easily start to think you are wearing thin on them, and that they must be exasperated with you. Any small sign of avoidance or annoyance, and your love radar is shot to a pulp.

You become paranoid. Extremely sensitive. Emotional. And crazed for attention.

You feel conflicted as to whether or not to share any part of your story ever again with them. But then you realize you love them too much and hope they feel that way about you too and that they won't actually want to just run and hide. That they will love you in spite of it all. You remember they can't see what's going on inside you. It's totally invisible to them unless you happen to be limping or unable to move much that day. They need to hear and be aware of what's going on with you.

You need help with even the simplest of tasks but you're afraid to ask... you don't want to be embarrassed that you need something while you used to have it all together... you don't want anyone to feel like they have to go out of their way for you or like you're being selfish... and you especially don't want it to come across like you think you have it the worst of anyone out there and don't realize that some have it much, much worse.

But often those are the most desperate of our moments, when we need to reach out the most and need someone's help the most.

Instead we often just sink back into ourselves, dividing us even further from the rest of humanity.

Hence part of the reason why I started this blog. I wanted to be more vocal and visible about the realities of fighting this chronic illness. Not for anything for myself except further understanding, compassion, serving those who need help, and bringing more attention to chronic illnesses so people realize those people need help too.

We had an amazing sermon on Sunday. Part of it was about serving the needy. Someone sitting next to you could really be suffering and are you reaching out to them? Our pastor talked about making meals for those fighting cancer because at the end of the day the most overwhelming thing can just be trying to make a meal for your family. I immediately started crying. I was having a serious flare-up that day and was in extreme pain and fighting the desire to fall asleep at any given moment. I felt selfish and foolish. Selfish for wanting to be the one being served instead of desiring to give more to others when I have so little to give these days. And foolish for even thinking those thoughts and feeling so needy myself.

Believe me, I don't want to be in this position. But I believe God has given this to me for a reason and for his glory... I don't understand it, but I want to allow him to use me in whatever way possible. Even if that means I feel like I just want to die somedays. He can still use it for his glory, even when I'm not seeing it.


On another note... I get a lot of advice from various people on what steps to take next... sometimes from people who have Fibro or had some symptoms of it at one time... sometimes from people who just love me and are concerned. And I love everyone for caring and loving me in such a way. But I do have to admit that sometimes I get really overwhelmed by all the advice. I'm not saying I don't want it; I'm just saying it comes in intense waves and often I find myself overwhelmed and incapable of reading or thinking through the emails until things have calmed down.

And honestly sometimes all I need is a hug or a phone call saying "I care, what can I do," or an email just to say I love you. Sometimes all the advice can start to feel like it's criticism or personal attacks, even when it's not. There are days I just need to hear "I love you and I'm praying for you." Other times, for those closest to me, I just need a gentle hug or a shoulder to cry on or scream in pain on. And sometimes, just being there.

Part of it is that Fibro is different for each person. Sadly, Fibro is not a universal "this is how it's going to be". That's part of why it's so awful. You never know what you're going to get. It affects every part of my life. Everything I do. Everything I say. Every move I make. Every step I take. Every... every... everything.

I research a TON, and I often get discouraged, frustrated, or feel relief when I find something that might work for me. It's difficult that there's so much information out there, but it's also great at the same time. Since there wasn't much information available or even known 10-20 years ago on Fibro, I'm grateful for the opportunity to have an abundance of info.

It's just all a bit tough to take sometimes. So I carefully try to discern what to take in on a given day, and what to store away for another day.

All of this is very difficult for me, but I know I will succeed because I have God on my side. I know that I will continue to work as hard as is feasibly possible to combat this fibro thing. Thank you all for your loving support, prayers, and continued encouragement. And yes, continued advice, just know that I'll review it when the time is right for me.

For a full idea of how to support those with chronic illnesses, please check out these great sites:

The Spoon Theory

50 Ways to Help a Chronically Ill Friend
[taken from Lisa Copen's book "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend" or visit the author's website]

Love to you all!!!!!

4 comments:

melody said...

aww, Rochelle *hug* I can so deeply relate to the things you've shared here... so much of it sounds like what I've felt and thought.

I so appreciate your strong, firm commitment to keep your eyes fixed on Christ and your desire that this incredibly exhausting, painful, seemingly endless suffering will bring Him glory.

I think of you often throughout each day and wish there was more I could do for you. Do know I'm praying for you and cheering you on :)

Shelley K. said...

I think that one of the hardest thing we have to deal with (especially if the disease is autoimmune in nature--"but you DON'T LOOK SICK") comments.

Also, we have to remember that God truly only gives us as much as we can handle--never more.

Sending you gentle hugs and prayers.

Julie V. said...

Roe,

Thanks for sharing straight from your heart. This is the reality of what you live with on a daily basis and it's good to have an insiders view (straight from you) to know best how to care and love you.

So, I just wanted to say that I'm here for you if you need anything!!! I'm only a phone call away and a few minutes down the street from you.

I appreciate your friendship.

YOU ARE LOVED!!!

Love,

Julie

AuthorKimberlyLB said...

Wonderful post! Dealing with this beast can be a difficult thing from day to day, and sometimes, from hour to hour. God does give us what we can handle, but I just wish He didn't have so much faith in me sometimes lol! You keep on keeping on and if you need to vent, I'm an email away.

Stay fabulous!
Kimberley