The Loneliness and Occasional Despair of Chronic Illness

So I do try not to whinge too much, but I’ve been in pain, off and on, for several weeks, due to a vestigial organ that needs swift removal (but will also need to wait its turn, because surgery wait-lists are epic).

I have chronic seasonal insomnia, so in late December I saw a long-awaited internal medicine specialist who shrugged when I described my symptoms.

“What do you want me to do? Addison’s patients, you have poor sleep, you have poor quality of life.”

Then he suggested I lower my expectations.

I appreciated his frankness but not his implication: that there’s really nothing to be done for the likes of me.

Today I learned that my two-year wait for a consult for another organ is due to the fact that the doctor recorded my need for a specialist in the notes and then … neglected to refer me. The urgent and primary care centre was apologetic: the referral is now being put through. But nobody caught the mistake, because I don’t have a family doctor, and no one reviews doctors’ patient notes.

Some of the members of my online Addison’s Disease group feel pretty miserable much of the time, and many have far worse health than I do. Their posts are a litany of complaints about insurance companies and bad doctors, misdiagnoses and surgeries that go awry because their needs for IV hydrocortisone are ignored.

In general, I’m on the more sunny and optimistic side, and I eventually needed to step away from the group, because the negativity was too much.

Now I rather miss them.

Today I’m starting a creative writing and disability course online, with the amazing Kate Gies, and I’m hoping that will help, because I am tired. And ill. And really lonely, in this moment.

Navigating my health care needs when I haven’t had primary care access in 12 years but I do have five specialists is not easy.

Getting workplace accommodations and medical leave is also not easy. It feels like the insurer and I have different perspectives about their obligations.

I am, very fortunately, unionized, and my Faculty Association is amazingly helpful. And I feel so guilty that I need them not infrequently.

So to avoid giving in to despair, I’m writing letters: to my MLA, to the Premier, to the Prime Minister. We need a guarantee of access to health care, and that means that every Canadian needs a primary care physician or nurse practitioner.

We also need guarantees that insurance companies will live up to their obligations without being prodded by human rights complaints (which are, in any event, horrendously backlogged in BC).

And we need workplaces that acknowledge that faculty members provide extensive and sometimes exhausting care work and so maybe, occasionally, we might need care ourselves, especially during a period when many of our institutions are navigating substantial downsizing: that’s really stressful.

Thanks readers, for reading. Thanks for sending messages and “liking” posts. It’s very much appreciated. This is my letter to the world, as Dickinson put it, but with the happy difference that I hear back from some of you.