I have an invisible illness, this is what I want you to know: Opinion

Following a routine physical in the fall of 2012, my physician scheduled a follow up appointment to discuss my blood work. My red cell count was high and he wanted me to be re-tested.

While I waited for the results of the re-test over the Christmas holidays I, of course, Googled "red blood cell count high" and became quietly frantic.

Sent to our essential P.E.I. Cancer Treatment Centre in the new year, I was seen by a hematologist who diagnosed me with polycythemia vera (pronounced poly-cy-theme-ee-ah). Cue out of body experience.

I'd never heard of polycythemia vera (PV). Chances are, you haven't either.

All I knew was that I was going to be sent immediately, like this instant, for a phlebotomy (a blood draw), and then placed on a course of chemo pills, all in the hope of controlling my PV. Without treatment, I later read, people with PV can die within two years.

What is polycythemia vera?

Simply put, PV is a rare blood cancer whereby our bone marrow produces too many red blood cells, thickening our blood and putting us at risk of clots, heart attack and stroke, and in some cases it advances to leukemia.

No known cause or cure. Common symptoms are fatigue, headaches, dizziness, blurred vision, itchiness, bone pain, gout and bleeding and bruising, among others. Treatment aims to reduce our red blood cell count.

In that regard, my treatment plan is a fairly typical one.

I take a chemo pill twice a day, as well as a once daily low dose of acetylsalicylic acid (ASA, commonly known under the brand name Aspirin), and I have blood work every four to six weeks to monitor my red cell count and the progression of the disease.

If my count is above the maximum acceptable level, I go for the dreaded phlebotomy, where 450-500 millilitres (about two cups) of blood is typically drawn.

Luckily, the staff at the QEH who administer my blood draws are excellent, as are my specialist and GP who work as a team to keep me above ground.

Treatment and fatigue

Unfortunately, the blood that we lose can't be used for donation, or anything else for that matter, although I did hear about one guy in England with PV who uses his as fertilizer for his rosebushes.

As far as quality of life goes, however, these aspects have become more of an inconvenience than a daily worry.

But it's that fatigue I want you to know about. The deal is that, if you know me, you may not see it, you may not believe it, but sometimes I just can't follow through on a commitment, I can't take on a new project, I can't go to that thing I said I wanted to go to with you.

I need you to understand that my fatigue is something that sweeps in and changes everything in an instant. And I need you to be okay with that. Accept my decisions about what I can and can't do as my health dictates. Don't judge, doubt or coerce, please. If I can, I promise you I will.

What I want you to know

September is Blood Cancer Awareness Month. If you didn't know this, you're not alone. So many months, weeks and days to raise awareness for so many valid and important causes, it's easy for any one cause to get lost in the deluge.

I, however, am intimately familiar with September's significance, and it's not because I was planning to go back to school (I wasn't).

I need you to know that sometimes I experience fear about my disease and my prognosis, and sometimes that fear is rational and sometimes it's not.

Again, it can come out of the blue and change absolutely everything for me without notice. Just something else to be aware of and okay with.

If you're a friend, a family member, I'd like you to ask me, from time to time, about how I'm doing presently as a result of my disease.

Awareness for invisible illnesses

To have it acknowledged, to feel that you're aware I'm dealing with something out of the ordinary, means a lot to me. And if you really care, hop on the internet and Google a reliable source for information about it.

The Canadian MPN Network is a good place to start, but I've found MPN Voice the most useful personally.

To whomever I may introduce to my condition, I get that you may want to draw your own connection to my experience by telling me things like "Oh, I give blood all the time" or "I'm a donor!", but that can have the effect to me of sounding like you're trying to diminish my ongoing experience, one not of my choosing, one I want no part of.

The fact is, when you're donating blood you're doing something to be a Good Samaritan; I'm doing something to stay alive. Unfortunately, the blood I'm expelling is "no good", it gets wasted, while yours is going to help save a life.

But most of all what I want everyone reading this to do is to forget about me and the specifics of my weird, rare and invisible disease and multiply my experience by about 1,500.

That's an educated estimate of Islanders with invisible illnesses and disabilities living, working and cohabiting with you on a daily basis. I can't help but wonder, what is it that they want us to know?

This column is part of CBC's Opinion section. For more information about this section, please read this editor's blog and our FAQ.

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