Tuesday, 27 March 2012
In Envy of Cancer.
A telemarketer for a worthy charity called me today. They wanted me to know about the amazing raffle they currently had available to raise money for kids with cancer. They listed off a litany of prizes which included homes, vehicles, trips … very impressive. They only wanted $20 for 5 tickets - not much considering what you could win but then they clearly anticipated the thousands of people who would contribute. The telemarketer then went on to tell me about the ongoing research they had been doing for years and how they were close to a huge break through. It was exciting stuff.
I declined to participate. As I explained before … when I am asked about donating to any of the big causes, the answer is "no." It is "no" even though my life has been personally devastated by cancer and a few of the other worthwhile causes. It is "no" because within our family is a rare blood disorder that is horrific in its rampage and there are no big campaigns for, nor research dollars being sent to find even a treatment, let alone a cure.
After I hung up I felt incredibly angry, then sad ... and I spent the morning crying.
There are big differences here among charities. Cancer is a known, "respected" disease. It gets a lot of time at centre stage. People who suffer with rare illnesses face problems that go way beyond the lack of monies for research.
1. When someone announces that they have cancer, people respond immediately to the seriousness and offer compassion. When people with rare diseases state what they have, most people turn away without much of a response. They seldom take the time to ask any further questions or to understand that some of these illnesses can make cancer look like a brief cake walk.
2. When someone has cancer people are aware of what is going to happen and what help and support a person needs. They frequently offer to help. People with rare diseases are an unknown so even if someone wanted to help, they have no idea what to help with. The person with the illness probably has no idea what they are going to need help with.
3. When someone with cancer ends up at the hospital, people spring into action with care and compassion. No-one questions that statement …. "I have cancer." No-one calls into question your sanity or your personal integrity. When people with rare diseases show up, there is often little chance the doctors will know much about the illness or what they are supposed to do. People with rare illnesses almost always have both their sanity and personal integrity questioned and often leave the hospital without treatment and in tears from the lectures given them and the treatment received from medical staff.
4. When someone with cancer asks for pain meds, we give them as much as they need and is allowed. Often when people with rare illnesses ask, they are accused of drug seeking and their pain is questioned as well as their ability to handle it. They often hear phrases like "not even cancer patients need that much medication." This statement is probably true … true because the pain being suffered is much WORSE than what people suffer from cancer.
5. When someone with cancer is bedridden and then has a good day and manages to get out and be around people we applaud them and say things like "what spirit," "what courage!" When people with a rare illness manage to get out of bed and be around people we use that as evidence that they really are not THAT sick.
6. Cancer has a face that we all recognize. We know the weight loss, the hair loss, the dark circles under the eyes … it tells us this person is ill. If a person does not present in that way, we tend to disbelieve they are ill or in pain. Some rare illnesses do not cause the body to waste away like that, and so people use the comparison to cancer patients to say things about rare illness patients like "they don't even look THAT sick."
7. When someone with cancer states they are dying we help them to make their last days as comfortable as possible. When someone with a rare illness states the same thing, we usually argue with them and refuse to believe them, making their last days incredibly lonely and painful.
8. Cancer patients can hope. A cure may be just around the corner, treatments are improving all the time. There are many alternatives. People with rare illnesses are isolated and often without hope. Support Groups are difficult to find. Often there are not even any effective treatments and all they can do is try everything the doctor suggests, even though the doctor with have little to no experience with the illness.
9. Huge campaigns are done yearly and constantly for every type of cancer imagineable. When people become ill we run for them … we swim, we cut our hair, we have tournaments, and sales, and parties and auctions. When people become sick with a rare illness, their lives often empty of any meaningful relationships and they are reduced to what the "state" will pay for in regards to medical treatment which will be even less than what any patient with cancer who is financially struggling faces - less because many treatments will not be covered at all as they are so unknown.
10. When people die with cancer or beat it we often characterize them as heroes. We often carry on in their name raising more money. We admire them. When people die with rare illnesses no-one notices. Worse, when many people live on - a lifetime of battling pain and limitations and judgements, we fail to ever recognize their courage.
So yes, I felt sorry for my family today and for the continuing nightmare of a rare blood disorder, Acute Intermittent Porphyria, and the lack of donated homes, cars, and trips to raise money for the years of ongoing research that is about to have a major breakthrough and make a huge difference in the lives of so many children who suffer with cancer. I felt bad because I have kids and grandkids, and while misery is not a competition sport … I sometimes wish that their suffering mattered as much .
For more information See: American Porphyria Foundation
You might also like to read other articles on Porphyria by Aria E. Appleford
Sometimes Hope Is Just Being Believed - Acute Intermittent Porphyria.
How Many Tears Will It Take To Change The Way Doctors Respond to Porphyria?