This post is part of an on-going series exploring the ways in which marginalized identities and oppression play a role in medical care, particularly for disabled people. 

I try to hold it together as the road leading me home twists and turns. I feel the tears burning in my ears threatening to overflow. The lead weight sinks heavier into my chest trying to crumple my body. The tears begin to leak out and I wipe them away. No one is with me, but I still try to hide the tears, hide the signs of pain. Yet, in this moment, the crushing weight of hopelessness overcomes me and the tears pour down while I do my best to just make it home.

What do you do when you’re in pain that doesn’t end?

What do you do when you’re in pain and there’s no foreseeable end in sight?

What do you do when you see little chance of the pain ending?

Chronic pain is a challenging beast. Constant, or near constant, pain is so hard to deal with, but what many people don’t understand are the aspects of chronic pain that aren’t pain. Chronic pain is exhausting. It’s not the kind of exhausting of having a long day where you did many things. Chronic pain causes an exhaustion that is almost always pain. It’s waking up still tired. It’s going through your day in a fog, struggling to think or focus. It’s desperately wanting sleep but not being able to get comfortable enough to achieve that goal.

Chronic pain also takes a huge mental toll. When you are in pain, with little hope of the pain ending, the mental effects can be as bad if not worse than the pain. For most people in chronic pain, you eventually get used to the constant pain. The pain doesn’t go away, but it becomes easier to ignore, easier to push through, easier to handle. Yet, the exhaustion, the thought that life will always be this way, that things may not get better, can be overwhelming. It can be utterly hopeless and depressing.

I recently found a specialist for endometriosis who had some great ideas for treatment that seemed promising. I felt more hopeful than I had in a long time. It felt as if there was the proverbial light at the end of the tunnel. Until yesterday that is. I received a call from her office regarding insurance coverage of the prescribed treatments and was told that, more likely than not, insurance will not be covering these treatments, treatments that would cost $135-$170 a week, treatments I have no way of affording without insurance.

It was as if the wind had been knocked out of me as the light I had been running towards disappeared from view. The hope I had been clinging to that there may be an end in sight, the hope that there may soon be relief, vanished in an instant. With that hope gone, I was overtaken by soul-crushing depression.

To complicate matters, a few weeks ago I was prescribed pain medication that, while not eliminating the pain, significantly reduced my pain to manageable levels. Unfortunately, after only two weeks, the prescribing physician was no longer willing to prescribe this medicine anymore. I had been granted two wonderful weeks of relief. Two weeks during which the depression that is my near constant companion lifted. Two weeks during which I was able to accomplish what I needed to and still have energy to do things for fun.

Then, just like that, it was gone. The pain returned. The constant pain I had come to tolerate prior to medication was no longer tolerable. My ability to handle the pain and continue to function through it had significantly deteriorated. When you’re in pain for long enough, you forget what it’s like to not be in pain (which is, in itself depressing). In a way, this makes it easier to handle because you don’t have a point of reference to compare the pain with other than pain. Yet, when pain relief is granted, when there is a period of not being in pain, a new point of reference cements. There is now a state of lack of pain with which to compare the pain which makes it all the harder to handle the pain when it returns.

Now, I am left with the memory of pain relief that is no longer attainable with the knowledge that new treatments that could have helped are now out of reach due to bureaucracy and finances. I am struggling to find hope through the fog of pain, exhaustion, and depression now that the hope to which I had clung has been ripped away from me.

Chronic pain and depression often go hand in hand. Constant pain, in and of itself, often leads to depression. However, people with chronic pain often face many other factors that make this more difficult. People with disabilities face higher rates of poverty than the general public with 28% of disabled Americans in poverty in 2014 vs 12% of non-disabled Americans in the same year. Even for those with disabilities that are above the poverty line, many struggle financially. This is not only due to difficulty with employment and underemployment, but due to the outrageous costs of medical care.

In America, even with health insurance, health care is expensive. For example, with my health insurance, which costs me about $250 a month through my employer, a general doctor’s visit costs $35 and a specialist costs $60. For someone who is generally healthy and only sees the doctor on occasion, these prices may not seem horrendous, but when dealing with chronic illness, doctor’s appointments are often several times a month if not several times a week depending on the condition. These fees quickly add up. Then there are tests and treatments. Blood work and imaging can cost hundreds of dollars after insurance. Then, as mentioned previously, there are the treatments and tests insurance won’t cover which often makes them unattainable.

Chronic illness and chronic pain are expensive, yet those who suffer are twice as likely to experience poverty as the general public. Even for those of us who are above the poverty line, we are often underemployed while simultaneously facing a higher cost of living than a non-disabled person. The stress of managing financially and the inability to access treatment or care due to finances further worsen the depression and hopelessness that come along with chronic pain.

What do you do when you’re in pain that doesn’t end?

What do you do when you’re in pain and there’s no foreseeable end in sight?

What do you do when you see little chance of the pain ending?

We keep fighting. We push through and continue on because we have to. We strive to find the good. We cling to the small victories and bits of hope we can find. Sometimes, the depression will win and seem inescapable, but it does pass and we keep fighting.