How the Medical System Fails People with Chronic Illness

Trigger Warning: Suicide awareness

 

I have many doctors appointments and medical tests on a regular basis, but I still manage to not get effective care from many of my healthcare providers. My chronic cough remains undiagnosed and not effectively treated. My allergy attacks are getting more frequent and leaving me breathless and drugged on allergy meds and asthma meds. I have multiple joint issues that are left untreated and am told they will get worse, but there is no solution for stopping the degeneration. Doctors tend to eventually turn me out their doors with no available solution.

Why?

Because I am “not bad enough yet” and there is very little focus on preventative medicine. When you are “bad enough,” they treat you with the next step of care, but until then you are not given effective care.

When you get diagnosed with a chronic illness or you suffer from chronic pain, you are constantly asked about your mental health. How are you coping? Are you able to get out of bed on a regular basis? Does it interrupt your daily life? etc. etc.

Every new doctor I see asks me these exact questions. If you aren’t coping, they go to the next step in their method of care and that step usually includes a drug program or risky injections or steroids to help get you out of bed and cope. If you are “coping,” you are considered “not bad enough yet” and continually told to self-manage your symptoms and try physio-guided exercise, diet changes, supplements, etc. All of these alternatives help in a small degree, but they fall short.

But how do you actually measure “not bad enough yet” for someone with chronic illness or pain, especially when they have lived with it their entire life like me?

I also have the experience of having cognitive behaviour therapy (CBT) tools to help me cope with pain on a daily basis and “push through” my bad days so I can do things like have a shower, make food, go to the bathroom.

Doctors for the most part lack the ability to understand chronic illness and pain. The pain scale is different for us. The ability to cope is different for us, especially if there is a background of CBT or other coping mechanisms. They often don’t understand that the fact that I am seeking help from and seeing every specialist means I am bad enough. I’ve lived with chronic illness long enough to cope with bad days and live with high pain even on “good days.” And if I try to help them understand, they often say something along the lines of “I don’t want to start you on narcotics yet” and they don’t offer an alternative.

I don’t have a perfect solution. I’m not an expert. I will say that not being accused of being a drug seeker would be a great start and listening to what is happening to the patient as well as understanding that I may be “coping” but I am not doing well. The more bad days I have, the less and less I will be able to cope. My “good days” are days most would consider terrible.

I’ve overcome depression and suicide attempts to really value my life and value my abilities. To let pain stop that enjoyment for me is too late in my opinion and if that is “bad enough” for the medical professionals, I shudder to think what other patients are falling through the cracks – patients without my coping mechanisms – because the medical system is failing.

There is no mystery that the rate of suicide in the chronic illness community is higher. I have lost a family member with chronic illness to suicide.

I am not at risk myself. I have a fantastic family and friend network that is there for me plus the coping mechanisms to help me through the dark days, but I am at risk of losing my ability to cope. I am losing my ability to work and earn income. I am losing my ability to do basic tasks. I am losing and doctors are not helping.

We need an overhaul of how chronic illness is assessed and diagnosed. We need a new scale of understanding how a patient is coping. We also need a better system in place that considers a comprehensive view of patient care and has all of our health care providers talking to one another. With that conversation, maybe a real healthcare plan could be drawn up and the patient could feel hope. We need more patient advocates in health care policy and administration. We need to not wait until a patient is “bad enough” and make sure they don’t get there.

I see the start of this change, but it can’t come quick enough. We’ve already lost so many chronic illness warriors. Let there be not one more.

 

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