You Don't Know My Pain

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1

Every now and then I am hit with a world crushing realization. Chronic pain is virtually invisible to everyone who doesn't live with it. They can't see the pain, they can't feel it, therefore they don't realize how very bad and soul draining it is. And they tend to assume the pain sufferer is lazy, unreliable, and a "deadbeat".


I don’t give a ■■■■ about most people understanding my pain. I live with it, I deal with it, no one else needs to feel for me or understand what I’m going through. I got this. But there is one person I do rely on for a shoulder, to understand and be there for me. And he usually is. It’s those moments when he says or does something that smacks of his lack of understanding the true depth of what I’m going through. It’s those moments that stab deep through my heart.

He’s good about being there for me. He’s good about not bringing up the fact that we suffer financially solely because of my health issues (which weighs on me every second of every day). It costs a lot of money to be diabetic and have so many complications of diabetes. It’s even harder financially because I haven’t been working because of my many surgeries and recoveries, and chronic pain. And no, I don’t qualify for assistance or disability, etc. But when the ■■■■ hits the fan, even he turns and stares me down and throws his emotional support and understanding out the window.

So today I got it from him. I stood on my iceberg of tormenting solitude where all chronic pain sufferers are exiled to, and I listened to the one person I need the most tell me to go back to my daily agony so we can pay our bills. I needed to hold him and cry into his loving arms and be comforted, but he was the immediate source of my current pain so I had nowhere to turn. I was bombarded by truths of why we are drowning financially. It’s all my fault and I need to do what I need to do.

I know he’s stressed out. He feels like he’s failing at supporting us. He feels like he’s drowning so he’s grasping at any hope and help he can find. He tried so hard not to hurt me with his words, but how do you not hurt someone when you’re telling them the truth? You need to go back to work, anywhere, even if it means pain all day, everyday. YOU’RE why we’re in this hole, YOU need to help get us out.

I’ve been trying to find a job that wont require me to be in excruciating pain all day, but there’s just nothing out there right now. I have been working on my overall, diabetic, and nerve health and using many methods to help the pain, and making great progress, but the pain may never go completely away. That’s just medical fact.


I have a high tolerance for pain. But even the highest tolerance will get worn down over time.

Don’t misunderstand me here, I have no problem doing what I need to do to keep us afloat. I’d go through hell and all the pain in the world to do my part. I’ll take any job to pay the bills right now.

It’s not the pain itself…it’s feeling alone in my suffering that really hurts.

2

Well, you aren't alone. If I would have known about the pain I was going to suffer these past two years I might have not signed up for life. One thing I know for sure is that it hurts just as bad to stay at home as it does to get out in the world. Working is like therapy for me but it can't be too much, like before when I used to work full time.
Through trial and error I learned what works the best is a tool box full of skills and just sucking it up. Things that help for me are mindfulness, anger management, because yes I get mad about the pain, Dialectical Behavioral Therapy, exercise, fresh air, sleeping when I need to and when I can, taking really good care of diabetes. I find the diabetes management is key. Pain medication doesn't really do much but make matters worse. You have to be brave and move, once you start you will get more relief. I know it hurts, I hear you but the anxiety you get from worrying that you are not contributing adds to the mix.
I figure I hurt laying in bed, so what is the difference if I hurt on a commute. Getting focused on something that challenges you will help the pain recede. It is hard, but human beings can get used to anything and even in the most chronic pain there is relief at times, unexpected, it is precious.

3

I like giving my friends these sites to try and explain it to them

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

http://www.wikihow.com/Understand-Someone-With-Chronic-Pain

but some of them still just don't get it. Hang in there. Hope things get better for you. Pain sucks.

4

Tamra, I can definitely relate to your pain. I had rheumatoid arthritis for several years prior to being diagnosed with fibromyalgia. Then I inherited peripheral neuropathy--which I only thought was possible through diabetes, not through RA and fibro. The last blow came with the diabetes diagnosis.

Then my endo and rheumy explained that diabetes can cause pain when your BGs aren't under control.

How much pain can a girl take? So no matter how much medication, stretching, meditation, proper eating I do to keep all these gremlins in check, one of them is always acting out.

No one can "feel" your pain. People can sympathize, and some can empathize if they are in the same situation, but only you can feel what you are going through, and how you plan to address it.

Every day is a new, different day. What worked yesterday, just may not provide any relief tomorrow.

In my situation, only a very few, close knit of friends/co-workers even know of my medical problems. Therefore, I'm working daily in pain with fake cheery smile, while inside I am screaming in agony.

Sometimes I hurt so much until I'm numb to the pain; other times, it gets right in my face and takes away my voice to even converse with anyone. Those days I just want a peaceful, quiet room. But I have to work to support myself and my elderly mother.

5

Sheepdogs, I love the spoon theory. An online RA friend sent it to me when I was diagnosed, and it still helps me through those awful days when I think I just can't even take another step.

6

I have chronic pain too, I know how hard it can be, I've been fortunate to be able to manage mine fairly well so far. Hang in there. One rule I was taught in pain management is to learn your pain cycles or behaviors or whatever you want to call it and to stop the pain before it gets to a higher level with pain meds or whatever you need to do that, tens, heat/ice etc.

7

So true meee! Sometimes my pain is fueled by emotions, my cycle, fatigue, or weather, etc. So if I can keep those variables under control, I can control my pain level. That's one of the things my rheumy gets angry with me about is that I am not faithful with pain meds. But I don't like the 'fuzzy wuzzy' feelings it gives me. But sometimes I don't care, and I end up taking a pill.