Just as I have been in the midst of a major pain crisis, I saw this the other day:
The Attorney General of the United States stated that we chronic pain patients need to “take some aspirin and tough it out.”
When I first saw this, I had to really sit and take it in because I could not imagine that he could really be so woefully uneducated, calloused, or foolish.
But it seems he is.
So, it’s time to talk about chronic pain patients, like me, and why “taking an aspirin” just isn’t going to be enough now – or ever.
First, let me say that I am on a total of 6 medications to control my pain in different ways (none of which are aspirin) – and I am still in misery due to this current stage of my disease. However, I cannot imagine where I would be without them on board. I can barely walk right now, even diligently taking all of my meds exactly as I am supposed to.
For the chronic pain patient, pain management – which may or may not include opioids (they aren’t the only medications used – or even the primary ones) – allows us to function, get out of bed, walk around, and complete activities of daily living. Without it, often we aren’t able to do the simple things most healthy people take for granted.
Also, as I have stated before, due to the intensity of our pain and the negative effects it has on our psyche, the suicide rate among chronic pain patients is three times that of the healthy population. It is simply too much to bear, day in and day out, without relief. So, “take some aspirin and tough it out”? That’s a death sentence for many of us.
Even if the outcome is not so grim, the rate of depression among chronic pain patients is somewhere between 30-54% and anxiety disorders are right at 30% as well.
I can only speak to my own experience as a chronic pain patient due to rheumatoid arthritis but I am going to do my best to explain what it is like to live with my condition and say more than I’ve ever said about it.
So, let’s get honest:
My pain has consistently worsened over time and is almost impossible to manage. We (my rheumatologist and I) have added medications and adjusted medications and we do the best we can, but my disease is aggressive, and, oftentimes, it is one step ahead of us.
I never know from day-to-day what I am going to wake up to, both in terms of pain and function. Where many people have pain that is confined to a certain area of their body, my pain may appear in my feet, ankles, knees, hips, spine, hands, eyes, or lungs. Honestly, recently, it has been in all of them. And it has been breathtaking.
It manifests in different types of pain in different areas as well. For example, the pain in my spine is a deep, heavy burning, like it has been set on fire, where the pain in my knees now feels like they are being hit from the inside with a jack hammer. That is the only way I’ve been able to come up with to describe it.
Also, due to my long-term prednisone therapy, I now have two fractures in each of my feet (and a suspected third one in my right foot) as well. Due to my RA and blood flow issues, I am not a surgical candidate and these are not healing. So they are just mine. My feet as well as my ankles are absolutely agonizing these days. When I combine that pain with the pain in my knees, and the fact that my right hip has just exploded in the past few weeks, walking is a great challenge at times. Without medication, I would be bedbound right now.
I often keep as much of this as I can to myself. Why? Honestly, people get tired of hearing the same old song. And families get scared. And no one wants to be around a whiner. And it’s not just me. Most chronic pain patients do this.
And friends and families hear “I’m hurting” so much that it really doesn’t register anymore. Who can blame them? It is a broken record. So they don’t – or, really, they can’t – realize “I’m hurting” still means “I’m in agony.”
So, even with an incredible support system (like I have), chronic pain is terribly isolating. There is no way to avoid it. It is a lonely experience.
Emotional upheaval and stress magnify the pain signficantly – but so does the weather, wearing clothes with the wrong seams, sleeping in a slightly off position. . . There is no winning here.
And the pain is inescapable. Sometimes the right med combination will at least contain it but it is relentless.
Due to my pain, I often get my sleep in the form of naps, but don’t sleep well at all at night. On the occasion when I do manage to sleep deeply and long, I KNOW that I am going to pay dearly for it when I wake up. Everything is going to be on fire. And it’s going to take hours to contain.
And then there is the incredible burden. My doctors appointments and medications are incredibly expensive AND I am no longer able to work (as there is not a huge market for nurses who can’t walk AND have to have two naps a day AND absolutely HAVE to go lie down suddenly). So I not only contribute nothing, I also cost a lot. As I am still struggling to sort out disability, the weight of this adds a constant stress to me and to my family, and I wouldn’t be honest if I didn’t say that I, like most chronic pain patients, struggle at times to keep myself out of the dark places.
The dark places? When you sit with searing pain over most of your body and your lungs have caught fire too so even breathing hurts and you’ve been sitting on the edge of a panic attack all day and it’s time to go to the pharmacy again to pick up more meds and you just checked your email and two new bill statements are ready and you followed up on disability and nothing has been done and you aren’t really sure how you are going to manage to summon the strength to cook dinner today when that is the only thing you contribute in the first place right now, your mind starts to wander to what good you are possibly doing anybody, sitting here, hurting and costing. You can’t help it. Anybody with a heart and the ability to do math would feel this way after fighting this battle for months and years on end.
So, as someone who is not suicidal, who has access to the medications and healthcare I need, who has a family who loves me, I can easily see why – across the board – the rates of depression, anxiety, and suicide are so high in our people group.
This. Is. A. Hard. Life.
And aspirin and gumption aren’t going to fix it.
Needless to say, I am more than upset by these statements by our Attorney General.
I am furious.
Yes, there is an opioid crisis.
Yes, we MUST address it (my heart for helping those with addiction is no secret).
However, punishing those of us who suffer with chronic pain is not just inappropriate – it’s cruel.
And his statements indicated that he knows NOTHING about the nature of chronic pain or what chronic pain patients are actually living with on daily basis.
That he is in a position of power with this sort of thinking is terrifying to me.
This. Is. Not. Okay.
No, Mr Attorney General.
Just. . . NO.
Be well, everybody. Go take care of your people.
Grace and blessings.
Very well said. Thank you for your voice. I don’t often even know where or how it off I should express myself in these issues. Thank you so much.