Wednesday, February 10, 2016

"At Least It's Not Cancer" -- A Prejudice That Harms Patients

As a young bride barley off her honeymoon, I was diagnosed with a rare illness and told I would be lucky to see the age of thirty. My disease quickly robbed me of essential functions I never realized were a true privilege. Eating; biting into a delicious, juicy cheeseburger, abruptly become impossible. Now I had a tube. Breathing; simply walking and talking to an acquaintance became unfeasible. Now I had a tank. My months suddenly consisted of sixteen-plus doctor appointments and a bombardment of constant procedures -- just to stay alive. Chemotherapy wracked my fragile body every month in an attempt to destroy my malfunctioning immune system which believed my crucial organs, blood vessels, and skin were foreign invaders. In an instant my life, my husband's life, and my family's life were destroyed.

Yet, through this unbelievable grief, pain, and struggle, those around me seem to depict that my illness, the fatal illness that seized my body and destroyed the quality of life I had left to live, was somehow less tasking than another.

"At least it's not Cancer."

While many individuals are genuinely trying to express a supportive ideation, this phrase comes off as anything but. The statement brings on genuine emotional distress to those enduring rare illness, making them feel as though their anguish isn't important. Stating that one's disease is less distressing than another is not only unhelpful to a patient's situation, but extremely prejudiced. The phrase is frequently based not on fact regarding both illnesses, but off one's general understanding that Cancer is deadly, and the treatment is harsh. With media attention focused heavily on the devastation of Cancer, society truly has no idea how life-altering, and fatal other diseases of the human body can be, due to a lack of introduction. However, I don't believe that a shortage of knowledge should exonerate this improper comment.
Comparing diseases is a disrespectful habit that many people do not even realize they have formed. They have become so accustomed to watching those suffer around them from the epidemic that is Cancer, they are completely unaware, and sometimes even un-accepting that anything else could be just as violent. Many illnesses, such as Systemic Sclerosis which I suffer from, are rare, leading to a lack of knowledge regarding their severity and detriment to the body. While you may never have heard of this illness, it does not undoubtedly mean I am better off than if I were to be suffering from Cancer. The truth of the matter is -- many diseases destroy lives.

For most people the comparison epitome comes down to three important details: a patient's quality of life, the use of chemotherapy, and high mortality rates. These three essential elements lead many individuals to believe that Cancer truly is the most insufferable illness. Please be aware that I am not writing in an attempt to sway readers that one disease is worse than another, but writing to show the similarities that rare illness, and Cancer patients share. Hopefully, this awareness can bring about a positive change in the way we support all individuals fighting disease. So, let's take a moment to look at the similarities of Cancer, and my illness, Systemic Sclerosis, on the three topics mentioned above.

  1. Both diseases, depending on the severity or form, severely limit a patients quality of life. Both can strip away a person's basic human functions: breathing, eating, urinating, defecating, and their mobility, but also their appearance, independence, social life, business life, and financial stability. These illnesses rob patients of everything; their body is no longer their's. Many are bound to oxygen tanks, central lines, feeding tubes, wheelchairs, dialysis machines, IV poles, overwhelming amount of medication, and skilled physician care.
  2.  As in Cancer, many Systemic Sclerosis patients undergo intensive chemotherapy, and even Stem Cell, and Bone Marrow Transplants. They lose their hair, their fertility, and spend countless hours vomiting, desperately hoping for one small minute of nausea relief. They both suffer horrendous side effects of these treatments such as Graft vs Host from failed transplants, or other life long, potentially fatal consequences.
  3. Everyone has been affected by Cancer mortality in some way, whether it be a loved one, a friend, or a co-worker. You have probably watched someone suffer through a mirthless battle only to lose it in the end. I want you to know that Systemic Sclerosis, and rare illnesses like it, have high mortality rates as well. Patients are often given a short prognosis upon diagnosis, and told there is not much that can be done to assist them. Their battle will be filled with dismal treatments that rob the patient of their quality of life, only to end up succumbing to the disease in the end. As with Cancer life span varies, some patients only make it a few month, finding death in a hospital bed after a valiant effort to survive.

Many rare illnesses have no cure, no FDA approved treatments, little options for specialized care, and occasionally no hope for remission; the principle goal is to prolong a patient's life and attempt to keep them comfortable as the disease riddles their body. Countless rare illness have no awareness, little funding, and minimal support for patients, leaving many feeling alone in their never ending struggle.

After reading these similarities, is Cancer and a rare illness, such as Systemic Sclerosis, that different? Is one truly "worse" than the other? Is one patient's suffering more "significant" than another patient's? 

The reality is, both diseases have different stages, and forms, leaving some patients a prosperous prognosis, and others a poor prognosis. A patient's quality of life, their treatments plans, and overall outcome varies greatly depending on the organs affected in both Cancer and rare illness. So while yes, there are absolutely forms of Cancer that are much more deadly, with treatment much more hostile than specific rare illnesses, the same could be said vice versa. Is it truly fair for a by-stander to make that assumption knowing nothing about the illness they are discrediting?

Please recognize that comparing one's illness to another is not an appropriate way to console a suffering individual. Would you ever express to a Cancer patient, "At least it's not ________." More than likely the answer is no, so let's break this negative habit. Everyone fighting a battle deserves to be respected and extended empathy whether you have heard of their illness or not.

15 comments:

  1. Very well written article. As a stage 3 breast cancer survivor I totally agree with you. People need to be educated and learn that some times it is better just not to say something than to blurt out a stupid comparison. It is much better to tell the patient "I am here for you", "you are so strong" or just hug without words.

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    Replies
    1. Hi Rachael! Thank you so much for your thoughts! They truly mean a lot coming from the opposite perspective :) You are so right, we all just need to learn to support one an other! Hugs!

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  2. This blog post is so timely for me. I just had A Dr. and a P.A. tell me that my pain is different than cancer pain and I don't qualify for the pain meds that had been working for me for over a year. The reason they wanted to change my meds was because they were afraid of what the state and DEA were doing to pain clinics that had patients on short-acting pain meds. It seems that short-acting pain meds are the most abused and they are being pressured by the state of Indiana and The DEA to change over to long term meds.
    My P.A. actually told me that "there is cancer pain and then there is other types of pain". This was like he shot me through the heart. How dare he say that my pain wasn't as bad. He says that that's not what he mean't, but went ahead and changed my meds anyway. It was their way or the highway.
    I did some research and in the, "Indiana Pain Management Prescribing Final Rule", there didn't seem to be a difference in cancer vs. other. What it said was:
    Exclusions:
    The rule does not apply to:
    1. Patients with a terminal medical condition (Refer to definitions section.): Terminal – A condition caused by injury, disease or illness from which, to a reasonable degree of medical certainty:
    1) No recovery is expected.
    2) Progression to death can be anticipated as an eventual consequence of that condition.
    I fall into this category as I also have progressive scleroderma with pulmonary fibrosis. Both of which are considered to be terminal.
    My meds have been changed from something that worked very well to mediocre relief.
    What I have found is that it's not just the general public that is uneducated in what cancer vs. other illnesses are. It is also the medical community that is charged to help heal and lessoned our pain that needs a lesson or two.

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    Replies
    1. Mary, that is an absolute tragedy. I am so sorry your physicians made that very poor decision. It's such a shame that even doctors cannot grasp the seriousness of our illness. Hugs.

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  3. Excellently stated.
    I have never known or meet anyone else with scleroderma and I have been following you for a long time now.
    I was hoping to ask a you question.
    due to my skin tightening I can no longer make a fist with my hands and I can no longer bend my wrists with out suffering the consequences (unbearable pain). My hands & wrists have to be treated like a newborn baby, carefully and delicately. I have many many more problems. But My hands and wrists pains make it difficult to pick up my kids and play with them. Making it the most important problem.
    Do you have limited strength and mobility in your hands & wrists and if so has anything worked for you.
    I'm desperate.

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    Replies
    1. Hello Jarred,
      I am so sorry to hear that Scleroderma has riddled your hands. This disease is so devastating. I unfortunately wont be much help in the category as I have very minimal skin tightening. My disease is mostly internal so I haven't had to deal with the discomfort of sclerosis to your extent. I hope you are able to find some relief soon! A online support group may be your best bet to find some useful treatments. Good luck!

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    2. Hand Therapy worked wonders. I learned exercises (!), adaptive techniques and therapies. My pain was from carpal tunnel caused by Systemic Sclerosis. Wrist braces, Neurotin and Tramadol helped. Don't despair, there is help.

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  4. Stop trusting medical doctors. They know nothing of healing yourself through nutrition. You are destroying your immune system. Go to alternative homeopathic doctor. You are too young to be ignorant In this age of information.

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    Replies
    1. Considering destroying my immune system is the goal -- I think my doctors are doing a pretty good job. If you had more thoroughly read through my blog you would know I failed homeopathic treatments. Sorry to say your "troll" comment was wasted here! Have a great day! :)

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  5. I can understand your pain as my so. Has a rare disease however looking at him you would never know He takes 22 pills a day about 40 mos of liquid meds plus one sometimes two shots a day just to extend his life. Please visit his web site www.helpcamdenfindacure.org. I will keep you in my thoughts and prayers.

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  6. Wow! The insensitivity kills me! I'm a 2B breast cancer survivor of one year and I just came across your blog and have been catching up. The whole time I'm reading about your struggle I'm thinking "man, I got away lucky with just having cancer! "

    I sit here in admiration of your attitude and the fact that you just keep pushing no matter what.

    What everyone needs to realize is there's many struggles, just to different degrees.

    I'm so glad to see that you're improving. Thank you for writing about your struggles and your determination. It's incredibly inspiring.

    Sending love and light your way sweetie!

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  9. For whatever reason this has been one of the 'well meant' comments that has always irked me most. I found your article through The Mighty and am looking forward to following your blog. I have an as yet undifferentiated type of small vessel vasculitis and my toes and fingers keep trying to die. Most irritating! Best wishes, one spoonie to another x

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