Sunday, January 16, 2011

A Reality of Chronic, Invisible Illness

A cold, harsh reality of having a chronic, invisible illness is that people forget.

They forget that you feel awful every single day, no matter how you look on the outside. That it may ebb and flow, but that the pain and fatigue never goes away.

They forget that you're trying to not be a complainer, but that you truly have horrendous pain and fatigue, and are uncomfortable each and every day... whether you say anything about it or not.

They forget that you don't want to spend every waking, speaking moment of the day talking about your illness, but that it's still okay to ask how you're feeling and see if there's any way they can encourage and support you.

They forget that asking you "are you okay? you don't look so good" is just about the worst thing you could say. Especially to one who is also a hypochondriac with anxiety issues. I literally spent the rest of the day contemplating how terrible I looked and trying to hide my anxiety over it.

I also have the people who tell me encouraging compliments each week, who remind me that I look good and am doing better than I was a couple years ago. Which is truly remarkable and very kind.

Despite that the roller coaster of emotions that goes along with all of that is exhausting, I know it's just part of my life now. It's hard, but it's my new reality.

And don't get me wrong, I would never expect everyone to remember what my life is like now every second of the day. I don't want pity. I just wish people would remember sometimes. It's just hard to face the reality that I may look normal, but I don't ever feel normal.

I just read a post I learned about from the Fibro 360 Community on Facebook called The Invisibility of ME/CFS & Fibromyalgia which was a really good and helpful read. It's encouraging for those with chronic illnesses, and gives reminders to those without it of how to better understand what we go through. I highly recommend reading it!

Now like I said, I don't expect pity or sympathy... I just want to help others understand what life is like for us. It can often be very lonely, very depressing, very trying, and very frustrating... but we may not tell anyone in our lives what we're feeling every moment because we don't want to be gloomy and depressing all the time. We want to still live our lives. We want to still seek the best things life has to offer. I want to still honor God in every way I can through this and the body He has given to me.

I'm just sharing the dark, lonely road, and the harsh reality life with a chronic, invisible illness can bring. But I'm thankful for the love of Christ, and the goodness, grace, and mercy of God which is new each day. And I'm leaning fully on him to bring me through all the agonizing, stressful, draining, exhausting, confusing, depressing days. He carries me. That's all I need.


Debbie Vermilyea said...

Oh Rochelle, I know exactly what you are writing about. Soon after I was diagnoised with FM/CF my husband came home from work and asked, "How ya doin'? You look like you might be feeling better." Of course I was not feeling better so I told him, "I should paint little red dots on my face so everyone would realize I'm still sick and will always be sick." I've often thought about those little red dots. Good post Rochelle, thanks

Emily Ruth said...

I just discovered your blog!Fantastic blog and post! I wrote a very similar post to that last year. I love how you share your faith and I love how you write with such honesty, it's wonderful. Keep up the great work!

Anonymous said...

Hi Rochelle,
I just came over from Linda's blog. I can totally relate to this post. I think the hardest part of having Chronic Fatigue and severe allergies is that no one understands. No one understands that I feel like a train ran over me in the morning when I wake up. Only after taking many vitamins and sitting in the sauna for two hours can I even function for a few hours.

I like the idea of putting red dots on my face so people will understand that I am sick even though I "look" normal. My husband tries really hard, but really does not understand.

Thanks for sharing with such authenticity. It makes me feel that maybe someone "really" gets it.


Sleeping Beauty said...

I know what you mean. It's difficult to have a "good" day (and saying good is pushing it) and have loved ones think we are suddenly cured. Sometimes all it takes is one little comment to infringe pressure on us to be well. It's nice that some loved ones do actually try to understand, but even than they have no idea how affected we are by what they say. I hear you.

blueviolet said...

As you said, it's invisible. I wonder if because of that, people just don't know how to gauge their actions.

Missy Schranz said...

Rochelle, you've hit the nail on the head, so to speak. I feel EXACTLY the same way. I hate having to ride around stores in those carts, but if I didn't, I couldn't go to the store at all. I'd be trapped inside the house, where I just would get lonely and depressed. I look at people who are older than me, doing so many things I can't do right now, but that I could do like five years ago and I just want to cry for what I have lost. BUT, I have an extremely sweet husband who helps me out in every way....even helps me lift my bad leg up onto the bed at night or when I nap. He never complains and loves me for who I am. I thank God for him and for all you on the internet for the love and support. I hope I can do the same for you, Rochelle.
Have a good day! And we're all traveling that road together!!!!

Rochelle said...

Thank you all so much for your sweet comments! And welcome Emily & Tammy to my blog!! I appreciate everyone's support & encouragement so much, and I am so glad I'm not alone in this!

Blueviolet, it's nice to have another perspective. It's easy for us to get caught up in our worlds and how hard it is for us, but for those who love & care for us, I'm sure it's frustrating for them too. Thank you for that reminder. I just never know what to do to make the situation better. They forget, but how should I expect them to remember? I often want to forget. *sigh* Such an exhausting, confusing thing.