Hurt and pain come with chronic illness. It’s that old feeling of never being right, of never being enough. It creeps on you in the middle of the night. It creeps on you in the middle of a difficult flare. It creeps on you when you let your guard down and let yourself feel for once. For once you won’t be positive and hopeful. For once you will remove the block in your mind that says “don’t think about it.” And when that block is gone the feeling comes for you.
You feel inadequate. You feel loss. You feel anger. Most of all you feel pain. This time it’s not physical pain, though it hits you so intensely it almost feels like it is. No, this time it’s an emotional one. It’s the feeling that comes with loss and hurt. It hurts so much that you wish you could block it out, but it isn’t that easy. The more you block it out, the more it presses on you. It presses and presses until you feel like you’re going to explode with the pain and intensity of it.
Why is living with chronic illness so hard? Why is there so much hurt and pain with chronic illness?
Why does having a chronic illness have to be so hard? Why does it have to take so much? And why does it come to some and not others? There’s no satisfying answer to these questions. Life just throws different things at different people. We all have pain, we all have sorrow, which just has different types. You know this, but it doesn’t make things easier.
As you slowly move your way through life, gingerly stepping so as to not aggravate your pain, you look at the people around you. They appear bright and happy and healthy. They don’t look like they have a constant weight as you do. They don’t look like they have to do anything hard. After all, they have their health and anything is possible when you’re healthy.
Of course, it’s not that simple. You know that, but when the pain comes, logically reminding yourself that other people have it hard too doesn’t make you less hard. Because hard you have become. You’ve learned that you have no one to depend on besides yourself, and it has made you hard. People have let your down and left you alone so many times you no longer trust them. Now you block everyone out because no one seems to care.
But they do care, some of them. There are people out there who want to help, you just don’t know how to open up to them anymore. How do you open up something that’s been locked inside for so long? How do you trust someone with your pain when so many others have thrown you out the window. You don’t know, but the dam of pain threatens to burst and you wish you had the answers.
Why aren’t there easier answers?
Why can’t there be easier answers? Why couldn’t you be a different person, a person who didn’t become so hardened by betrayal and pain? You wish you were softer, but don’t know how to be that way. Soft isn’t for people with chronic illnesses who have to battle for acceptance and treatment every day. If you’re soft the doctor won’t listen to you. If you’re soft the pharmacist won’t fill your prescription. If you’re soft the insurance company won’t pay your bills. If you’re soft your family won’t believe you. If you’re soft your illness will break you. You can’t be soft.
You don’t want to be broken. You want to be whole.
You want things to be better
You want to be better
But you don’t know-how.
You remind yourself that the feeling of never being enough will go back into hiding in the morning. You only allow yourself to feel the depth of the pain for a small moment. Shortly you’ll put on your positive attitude and keep fighting. Because life goes on even with chronic illness and you know things will feel better another day.
Perfect timing for what (January 15th) is known to be the most depressing day of the year — deemed Blue Monday! Fortunately this is a better time of the year for me, with the stress and work of the holidays behind me — but the cold and the darkness of winter sure don’t make things any easier for struggling with pain and depression! Twenty minutes at a time is sometimes the only way through a day — that, and trying not to think about much more than the immediate task at hand.
I had no idea my depressing post was so well timed! I think the after holiday blues and the coldish weather have gotten to me, so I’ve been wondering if it has gotten to other people as well. I do the same thing to get through the day, try not to think too far ahead.
Thank you for writing this and putting yourself out there. I just found your post, and I am very grateful that I did. After 9 years of fighting with RA, Sjogrens, and now what they think is the added bonus of fibromyalgia, I am really standing on the edge and my feet are slipping. It all just feels like it never ends. I am a master at pretending that I feel totally fine. Slapping on some makeup and a genuinely fake smile and stumbling through my day. When all the while I feel every stabbing, twinging, wrenching, pulling , and nawing pain. Every hour the thought crosses my mind that I should just give up. That no one listens, that doctors down care, or even more that they just “ don’t get it”. More than anything, I hate it’s invisibility. So I just wanted to let you know that I see you and I feel every word that you said.
Thank you for writing this and putting yourself out there. I just found your post, and I am very grateful that I did. After 9 years of fighting with RA, Sjogrens, and now what they think is the added bonus of fibromyalgia, I am really standing on the edge and my feet are slipping. It all just feels like it never ends. I am a master at pretending that I feel totally fine. Slapping on some makeup and a genuinely fake smile and stumbling through my day. When all the while I feel every stabbing, twinging, wrenching, pulling, and nawing pain. Every hour the thought crosses my mind that I should just give up. That no one listens, that doctors don’t care, or even more that they just “ don’t get it”. More than anything, I hate it’s invisibility. So I just wanted to let you know that I see you and I feel every word that you said.
What a powerful testimony of what it’s like to live with chronic illness. We’re so often our own worst enemies because we do tell ourselves that we’re inadequate, that we’re not enough, that we’re all alone. Like you, I experience these feelings the most when I’m in a flare and the pain and fatigue just get to be too much, and I used to feel guilty for feeling sorry for myself when I knew other people were much worse off than me. Now I just allow myself to feel whatever I’m feeling, cry if I need to, and move forward again as I start to feel better. Like you said, “life goes on….you know you’ll feel better another day.” Thanks for sharing such an honest look at the emotional pain that comes with chronic illness. Pinning and sharing on FB page.
I think I’ve finally gotten to the same point. I’ve realized that it’s okay to cry for a while, as long as I manage to pick myself back up when I’m done. No one can be positive 100% of the time!
Well said, and beautiful timing as I woke up to screaming pain and a cold snowfall. These feelings also tend to hit me, mostly during extremely painful flares, and a tired body from the fight of keeping a good face. Then “BAM” pity party hits. Normally I can be found crying and raging into a pillow until exhaustion takes over and I go into a fretful sleep. They do not come often, but when they do, I am like a screaming child that cannot and will not be soothed. Thankfully, I do them alone, so as not to totally lose the love of the so few friends and loved ones I have. Not to say I am a quiet pain fighter, for that would be impossible. But my rages at how unfair life is are so selfish, I would be mortified if caught in such an act of pure despair.
Afterwards, as I am putting my face back on and picking myself back up, I feel terrible knowing that there are others out there suffering as well, even worse. The world we live in can be cruel and unforgiving. Many people are suffering. And your right, we know this. But some days are just so hard, we just can’t put the happy face on for just one more
minute. When you are in constant pain however, I think it is normal, maybe even helpful to have these occasional “pity parties” as I call them to erupt, explode, and release. Through the tears and gulps comes a calm to help me continue on with life as I know it. And it reminds me that I have no choice in the matter, like so many others, and I just need to keep going forward with hope, and pray tomorrow will be a better day.
Thank you for this post today. Thank you for reminding me that I am not alone, I am not the only one that hurts, and that I am not being selfish in that moment when it just all becomes too much. The pain and the struggle is real.
We may feel alone, but we are not.
I agree that having a pity parties are helpful, no one can be happy 100% of the time. It can be cathartic to release all those emotions. I know I usually feel better afterwords!
Knowing other people have it bad, doesn’t make your pain go away.
Hang in there
I am looking for help in not feeling so alone. I have had CRPS 3months I had never heard of it so it was hard to find a Dr. To help me get help things have been hard for awhile but found two dortors . But have know one to talk to about CRPS I would like to feel like there is someone out there I can talk to.
Teresa,
Constant pain is very frightening, exhausting and lonely. I have not been actually diagnosed with CRPS, but I strongly feel it is a possibility instead of fibromyalgia. It is a constant fight to be heard. Many times you feel very misunderstood and lonely in the fight. You are not alone, there are many of us that feel the struggle daily. You may of course contact me as a source of an understanding person who also deals with pain daily.
Debi
Hi Teresa,
I have had CRPS since 2002 and would love to offer any support, questions, advice that I can. I have CRPS in my left foot/leg.
You wrote this feelings down very well. Thank you.