Being Sick Is Not Just About Medical Care
This is a common misconception I see everywhere from doctors' offices to social media. While I understand how validating it can feel to post a picture from the infusion clinic showing your invisible illness is real it shouldn't be necessary and it shouldn't be how we define sickness. Here's why...
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Sickness can be defined in 3 ways
-Symptoms and Suffering
-Functionality Loss
-Life-threatening / Limiting
I will go through this one by one to show that none of them are directly linked to how much medical care someone receives.
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Symptoms and Suffering
This includes things like pain, fatigue, nausea, and malaise. In general, if you feel like you got hit by a bus when you wake up you are probably sick. There is a gradation of these symptoms but unfortunately, the severity of symptoms does not often correlate with medication or treatment. That is because diseases with more objective measures like cancer, ANA positive rheumatoid disease, and diseases or injuries that show on x-ray or MRI are far more likely to be given prescription medications and diseases that don't are far more likely to be referred to therapy or placed on medication. Additionally, whether you receive a medication largely depends on if medication for your condition exists, for example, I am on 4 different prescription drugs for my migraines but none for my cluster headaches despite the cluster headaches being more painful because cluster headache abortive don't exist. Lacking medication to treat a symptom makes you more sick, not less.
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Functionality Loss
In my opinion, this is the best objective way to measure sickness. It is something scales like the SF-36 do well. Functionality loss is having to give up activities or actions because of illness. For example, someone with paralyzed legs has lost the functionality of walking. But how much functionality you lose also depends on treatment. If that same paralyzed person has access to a wheelchair and accessible venues they may lose very little functionality compared to if they did not have their wheelchair. In this way, having access to more mobility aids or more assistance makes you less sick not more. This is exactly what people mean when they say "wheelchair user" over "wheelchair-bound". The chair adds functionality. In this way, fatigue makes people far more sick than many other conditions because it often cannot be worked around as it is a primary loss of energy. While some accommodations might help save energy if you don't have the energy to do the core work of a job, no amount of accommodation of how you work that job will allow you to work. Chronic pain can also be very debilitating for similar reasons of being difficult to mitigate however unlike fatigue medications do exist that address pain.
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Life-Threatening / Limiting
This is probably where medical treatment is most closely linked to sickness but even here it is not foolproof. In general, we treat life-threatening illnesses with much more invasive medical care than non-life threatening illnesses. However, this only applies when we have knowledge of what to treat. For example, a study showed that ME patients die on average 25 years earlier than healthy patients of heart failure. But because we do not know the reason for these deaths there are no medical interventions for heart health in MECFS. Similarly, those with rare diseases often find themselves with life-threatening complications but are not on aggressive treatment plans due to a lack of proven medications to treat that disease. Instead, they may simply live with a high risk of life-threatening complications. This doesn't make them less sick than someone who receives regular infusions or medication to prevent complications. It makes them more sick in that they are more likely to die. Additionally, we are very bad at addressing life-limiting conditions with preventative treatment like preventing fully paralyzed and bedbound patients whose quality of life can reach near zero but we often treat these outcomes with much less concern than death even if life is limited to the point of living death.
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The point
Medical care often correlates with disease characteristics such as
-How treatable an illness is
-How well it shows up on current testing technology
-Whether we know how it will kill someone / can prevent death
Not to mention it is often affected by
-Having good or bad insurance
-Where in the world you live
-Whether you are rich
-Whether you have people who advocate for you
-Whether you have access to a good doctor
But what determines how sick you are is
-Symptoms and suffering
-Functionality loss
-Threat to life/functionality
Therefore, how much medical care someone receives is a poor measure of how sick someone is and we should stop using it as such.
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What can I do?
Acknowledge the good and bad in treatments. It is okay to resent treatment, especially things like chemotherapy that make you feel awful. But by acknowledging the privilege of having a treatable illness you provide visibility to the many people with rare or untreatable diseases who wish there was any treatment available.
Don't default to hospital pictures as the only way of showing illness. I understand how validating it can be to receive an outpouring of support when you are hospitalized. But by also sharing when you have severe symptoms at home that are untreatable you emphasize that being sick is not just reserved for those in hospital. In fact the most sick patients often receive infusions or treatments at home to relieve bodily stress from traveling to the hospital)
Don't treat medication lists or how many hospital admissions you've had as a currency that "proves" illness. Both for yourself and others. Instead use functionality loss, pain and symptoms, and life-threatening or limiting emergencies. Very sick patients will often have lots of both of these but some cases like severe ME patients may not have many of the first despite being severely ill.
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Things to note
1.) Yes sick patients do receive more care on average than less sick patients. My point is simply that it is not a direct correlation and treating it as such ignores some of the most marginalized and disabled patients.
2.) Receiving medical care for an illness is super validating and that feeling is legitimate. Especially if you fought hard to receive the treatment you need as many patients with chronic illness as forced to do. But please remember that not everyone has the financial or physical stamina to fight through those barriers and not doing so doesn't make them less sick.
3.) Posting about treatments, hospital visits, medication, etc is totally fine and a great way to find other people who relate to your situation. This is extra true for people receiving invasive or difficult treatments. Just remember not to bake the assumption that treatment = valid illness into your post.
4.) This post is not an excuse to go around judging how sick people are or whether they have the right to call themselves disabled etc. If anything I hope this shows why it is so impossible for anyone not living in someone's body to judge how sick they are.
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Summary
The amount of medical care someone receives is not a direct analog for how sick they are and should not be treated as such. Instead, someone's symptoms and suffering, functionality loss, and life-threatening or limiting conditions much better show how sick they are.
Treatment does not equal a more valid illness.
Only the person living with illness knows how sick they are as they are the ones to report symptoms and suffering and they make the decision of how hard to push themselves (hopefully taking a responsible approach that cares for their body!) We should have the basic decency that when someone reports suffering to believe them and not rely on copious hospital photos as "proof".
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How much medical treatment you receive is not a measure of how sick you are.
There are a million ways to measure being "sick." In my opinion, it is always only the person living the body that truly knows how sick they are. But since we do tend to want to objectively talk about illness and people being sick here are some much better measures than how much medical care you receive.
Your symptoms and suffering...
-Pain levels
-Fatigue
-Dysautonomia
-Anything else that causes you distress and disrupts your day
Your functional level...
-Does it stop you from working?
-Does it make it hard to have a social life?
-Does it stop you from leaving home?
-Does it keep you bedbound?
-What support needs does it create?
Threats to your life and quality of life...
-Are you at greater risk of death?
-Do you need to do something every day to prevent deterioration and/or death?
-Does it limit your life expectancy and life potential?
None of these correspond directly with how much medical care we receive because medical care can only be given when a disease is understood and treatment exists. For many types of chronic illness especially myalgic encephalomyelitis and fibromyalgia we simply do not know what is going wrong and do not yet have treatments. For many rare disease patients, we may not have the studies to support many treatments. Just because someone's illness is misunderstood or has poor treatment options does not make them less sick.
Severe ME is more disabling than late-stage AIDs or chemotherapy. But we can do very little to treat it. Many severe and very severe ME patients go years without medical care.
This post is not intended to invalidate anyone's illness. Receiving treatment for an illness when you fought hard to get that treatment can be incredibly validating. Likewise, treatments for chronic illness can be difficult and side effects may leave patients feeling conflicted about their treatments. My point is not to invalidate these feelings but to remind everyone that medical care is a privilege and not a direct marker of how sick someone is.
