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“At least it’s not cancer,” they say, as if that’s meant to make me feel better. As if cancer is the worst thing that could happen to you, as if there are no other conditions as bad as cancer. From my perspective right now, cancer seems preferable.
Cancer has a name—you know who your enemy is. With cancer there really are only two outcomes. If you’re lucky, you beat it. If you’re not, you die—usually within two years of first diagnosis and then all your suffering will be over—which still makes you lucky in my book.
With chronic non-specific illness you don’t know your enemy; you may have never even seen his face and he may torment you for decades. It’s like being stalked by a sadistic psychopath who sends you sick messages of how he’s going to torture and kill you. He’s extremely intelligent and no matter how many times you move to somewhere new, somewhere "safe," he always finds you and he leaves no trace so you can’t prove that he actually exists. Your friends and family, even the police, don’t believe you and think you’re fabricating the whole thing just to get attention. Then one day, he finally kills you in a most grisly way and you don’t even get the satisfaction of saying, “I told you so.” When at last the police do investigate, they discover quite by accident that he was the quiet friendly neighbor that no one imagined could harm a fly. My stalker has been tormenting me for five years now and remains one step ahead.
When a person has cancer, friends and family, even the community, rally round with support and practical help. They send cards and flowers, come round with cooked meals, organize working bees to help with the housework and tidy the garden.
But when you have a chronic non-specific illness you’re left to deal with it, and all the practicalities of daily life, on your own. I get it—it’s not like you’re going to die, not just yet anyway, so who wants to get roped into making dinners and doing someone else’s housework for what could be decades? We’re all happy to help the cancer patient because we know it’s not going to be forever.
With chronic non-specific illness, your friends and family slowly distance themselves. To be fair, you also begin to distance yourself from your friends and family—people in general. It’s easier that way. No one wants to spend time with that friend who is always so self-absorbed with their problems that they can’t support you with yours. And it becomes tiresome listening to them drone on about their latest theory of what is making them sick. This month it’s hyper allergy syndrome, last month it was psoriasis, the month before that it was hormones. This month antihistamines are going to cure it, last month it was drinking bicarbonate of soda solution, the month before that it was acupuncture. I get it, I really do. I don’t blame them for losing their patience with me. No one wants to be around someone who is always bringing people down.
So it becomes easier to avoid people. Easier to be alone and not feel pressured to put on a brave face and pretend that you’re feeling well. Easier to hide how bad it really is. People often say I’m strong for being on my own, but I’m not. I’m selfish. The only way I can cope, the only way I can look after myself, is by being selfish and blocking everyone else out of my life. It’s the only way I can stay strong. When I do go out, people remark about how positive I am, what a great attitude I have to what I’m dealing with, or if they don’t know me personally, they compliment me on how "I’m always smiling." Sigh, if they only knew...
Though I have several congenital conditions that have affected my health since childhood, it is in the last five years that I have been struck down with debilitating chronic illness that no one can yet truly identify. At best, I’m told I have some kind of "hyper allergy syndrome."
I’m plagued with a crushing fatigue (made worse by the industrial-strength cocktail of medication I now take that is strong enough to bring down an elephant), food sensitivities, and a terrible dermatitis that causes my hands to swell and erupt in hundreds of tiny blisters and raw open wounds and flaking skin. It’s like having a thousand paper cuts or wearing gloves made of stinging nettle leaves.
I have tried everything—supplements, herbal remedies, acupuncture, various different medications, even positive thinking trying to will myself well. Some things don’t work at all, some help for a while and then it returns. It’s like trying to fight the Borg (a technologically-enhanced alien species in Star Trek that is momentarily weakened by weapons’ fire but then adapts and becomes completely resistant and indestructible).
My life has become smaller and smaller. I can’t do any of the hobbies that I loved so much because my hands are so painful, chubby, and useless. I have no social life. I live on a benefit and though I try to look for work, I don’t get beyond an interview, if I’m lucky to get one, as my oozing leprous-looking hands put off any potential employer the minute I walk through the door. I don’t date because of the leprous hands thing and the very idea of being intimate with someone—and I don’t even mean physically—makes me feel nauseous.
If I was lucky I might die tomorrow from heart attack from the strain of it all, but knowing my luck it’s only going finish me off in another 10-20 years yet, when my kidneys eventually give out from the toxic load of all the medications I’ve ingested, or it finally mercifully turns to cancer.
Tomorrow I have an appointment with yet another doctor, following yet another theory in the hope that maybe this time I’m on the right track to discovering the identity of my psychopath stalker. I say "hope" loosely. It’s more like desperation. I’m losing hope and the will to keep fighting. It’s only desperation that keeps me going.