"Sometimes I Wish I Had Cancer."

I found this article today and it nearly brought me to tears. I can relate to nearly every one of these points, and every time I've tried to explain it I just can't express it right. I'm not saying this to grasp for attention, I'm grasping for understanding.

I know many people have cancer, and it is definitely a dark and terrifying time. I'm not downplaying the terribleness of cancer, I just hope to help people understand that cancer is not the only or ultimate struggle. So many people experience the same sense that this article is expresses--that if only it was cancer, people would have some basis to understand.

And now, an article by another woman experiencing an invisible, misunderstood illness:

How many times have I heard people say "it could be worse, you could have cancer"... or anything of a similar vein.

... It drives me nuts.

One particular occasion I remember: I was speaking to a head pharmacist, someone with a degree in pharmacology, and I was inquiring about finding an effective pain killer for severe chronic neuropathic pain... (*1)

My specific question was "I'm currently having to use oral morphine, it doesn't work very well, but the injections do okay, what can you tell me about the patches?"

The response I got? I kid you not:

"But that's really for cancer patients"...

So this wont be the first time I've said this. And it probably wont be the last either.

Sometimes… I wish I had cancer.

I mean, looking at it - and I suspect much, if not all of this, is true for others too - just kinda makes why quite obvious:

Commonalities:

• I've got a shortened lifespan.
• If left untreated I die, pretty quickly too.
• I'm in immense amounts of pain on a daily basis.
• I'm exhausted with fatigue pretty much all the time.
• I have to take tons of medications, many of which make me sick.
• I feel nauseous pretty much most of the time no matter what.
• I have to attend an unpleasant treatment solution for several hours multiple times a week. (In fact, at my previous clinic we were next door to the chemo unit & shared a waiting room. Oh, and it also makes me horridly sick)

Differences:

• I don't have a possible cure, remission or recovery (Yes, if you are lucky enough to 'survive' cancer, you live the rest of your life with the possibility of a relapse or recurrence - but at least for awhile, you get your life back)
• I constantly have to explain that I am sick to people.
• I have to explain how I'm sick to people (sometimes even medical staff) and what that means in practical terms.
• I have to answer endless questions from people (many of which are so personal they actually have no right to even ask them)
• I have to re-explain things to people who are ignorant, don't understand, don't listen, or don't careabout my illness.
• I struggle to receive adequate treatment for my pain.
• I have been accused of drug seeking when trying to just get my meds.
• I have been accused of taking illegal drugs when I take only necessary pills. (Taking unnecessary ones could be incredibly dangerous for me - even if they're prescribed by medical personnel, I've nearly died from a medication reaction)
• I have been accused of overmedicating myself, when I'm usually careful to the point of under-medicating.
• I have had my needs ignored because my condition is "not serious",  not bad enough/that bad". "all made up", "psychosomatic", "just play acting", "being made out worse than it is" or "isn't real". Sometimes this has actively endangered my safety, health & wellbeing.
• I have been told "You're not really sick" or "You're not disabled" - last I checked I am unable to hold a job or pursue an education.
• I have also been excluded from things I should by rights be allowed for my disability, because I'm not "really disabled" or "disabled enough" or "don't look sick/disabled" - because I'm not in a wheelchair, blind, deaf and in my teens & twenties, obviously not elderly.
• I get asked "when will they cure it?" or told "oh, doctor's will fix that"... do people not understand what the term "chronic" means? In case they don't and are reading this: 1. Persisting for a long time or constantly recurring (which usually means the rest of your life), 2. Having such an illness, 3. Long-lasting and difficult to eradicate...

• I get told my meds make me worse...
• I get told I'm not following my treatment otherwise I would be better.
• I've been told I "shouldn't dwell on it" or "let it control me"
• I've been told I deserve to be sick.
• I've been told that if I were more moral/religious/positive/outgoing/insert-form-of-predominant-groupthink-mentality-here I would get better or wouldn't be sick.
• I've had people tell me that if I just did/tried XYZ it would solve all my problems. (Often XYZ is either something that I did try & it didn't work, or completely against my medical recommendations, sometimes it's just ridiculous)
• I've been accused of not wanting to get better or choosing to be sick.
• I have to justify practically every moment of my life to someone.

But mostly, because no matter what I do or say, no-one who isn't in a similar position will understand or at least accept & try to understand my situation properly or even to the same extent as people do when you say those three little words: "I have cancer"

So sometimes... I wish I had cancer instead.

***

1. For those of you not up on the terminology from everyday use, neuropathic pain means malfunction or damage of your peripheral and/or central nervous system, that includes your brainstem & spinal cord. If you've ever had shingles, then you have a pretty good idea of what I live with on the average day, on bad days, it feels simultaneously like being electrocuted at either odd intervals, or continuously, often along with a severe burning feeling. This is in fact, exactly the type of pain that a cancer patient may experience.
2. It's probably relevant enough that I should mention: Before the exchange, I specifically told her not only about my general neuropathy, but that my main concern was my Trigeminal Neuralgia, or if you've ever heard of it, it's probably by it's more common name "The Suicide Disease" - so called because as it has been described as probably "the most painful affliction known to mankind/medical practice." and left inadequately treated (which is sadly quite common since it is frequently misdiagnosed, usually unresponsive to anything except really high doses of serious painkillers: morphine injections may or may not work) otherwise happy & healthy people have literally tried (and quite a few succeeded: multiple attempts tend to have a higher success rate) to commit suicide in order to make the pain stop.