Invisible Illness Awareness Week

This week (October 18-24) is Invisible Disabilities Week, an awareness campaign sponsored by the Invisible Disabilities Association.

The IDA describes itself this way: "IDA is about believing. We believe you! The frequently invisible nature of illness and pain may lead to disbelief about that illness or pain by those surrounding the person who lives daily with invisible disabilities. This disbelief can lead to misunderstandings, rejection by friends, family and health care providers. It may also lead to accusations of laziness or faking an illness."

Part of the awareness campaign is to have people post about their invisible disabilities on social media, so I have seen lots of stuff on Facebook and Twitter over the last couple of days (and probably will see more during the rest of the week). I have some people who are very close to me who have invisible disabilities -- physical problems that people can't see (at least at first) but that affect their lives.

It all sounds very much to me like Follicular Lymphoma. As we all know, FL is a cancer that doesn't always show up the way other cancers do. Not all of us have traditional chemotherapy, for example, with the kind of "obvious" signs that show we have cancer, like a bald head.

I wrote a piece last year for Blood-Cancer.com called "Not Your Typical Blood Cancer Patient," where I looked at what kind of pictures show up if you do an online search for "Cancer Patient." Lots of bald heads and head scarves and very sad expressions. But not all of us look that way on the outside.

In the title for this blog entry, I'm using the term "Invisible Illness" rather than "Invisible Disability." I think it's more encompassing of out experience, though I fully support the goals of the IDA and its awareness week.

Many Follicular Lymphoma patients do indeed have invisible disabilities. Whether from symptoms of the disease, or side effects of treatment, or even side effects of the medicines that help us deal with the side effects of the treatments, our bodies have changed in ways that make it hard to do the things we used to do. Those changes aren't visible to everyone right away. And, like the IDA says, that can lead to misunderstandings, rejection, and accusations of laziness or faking. I feel for those folks.

And then for many of us, we don't have the invisible disability, but we do have an invisible illness. We don't have the bald head of chemo treatment, for example, or other signs of cancer. (A woman in one of the online FL support groups I am in recently said a friend accused her of faking her cancer because she "didn't walk like a cancer patient." I can't even begin to imagine what that means.)

Those of us with invisible illnesses like FL might not have symptoms or long-term side effects that have affected our physical abilities. But that doesn't mean we don't live with physical pain every day, in some way, that we quietly ignore or cover up so we can get on with what we need to do, and, maybe "try not to be a bother to anyone."

And we most certainly live with the emotional illnesses that come with Follicular Lymphoma, like the fear that it will come back, or get worse, or transform into something else. That fear never really goes away (even after almost 13 years, as I can unfortunately tell you). And it's even worse during a pandemic.

And the guilt. You know this if you're like me, in a weird state of being in-between -- you haven't had a clean scan in almost 13 years, but you're also living a "normal" life, working and laughing and going for walks, and not really being "sick" but not exactly being "well" either. There's some heavy guilt that comes with that, sometimes. You maybe "don't walk like a cancer patient," and you wonder why you're lucky and others aren't.

The message of Invisible Disability Week is that you are not alone. It's easy to feel like you are, especially when you think you "look like everyone else" but don't feel like they do (or like how you suspect they do).

So take this as a reminder, my dear fellow Follicular Lymphoma patients, that you are not alone. There are approximately 70,000 people in the world with a Follicular Lymphoma diagnosis. There are readers of this blog from about 80 countries. And most of all, I'm here if you want to ask a question, share some good news, learn some new stuff, or just rant about people saying you don't "walk like a cancer patient."

Enjoy the week.