Early on in my sick person career I realized that sometimes healthy people have this fantasy that there are benefits to being chronically ill, and that some percentage of chronically ill people are faking it to gain said benefits. Just leaving aside the fact that faking an illness/disease/disorder is actually one of several mental illnesses and therefore the sick people are still sick, I can tell you that there aren’t benefits. Being chronically ill is really expensive and time consuming and painful and limiting and it makes relationships harder and more awkward and it complicates basically every aspect of your life. Even simple things like grocery shopping.
I think the issue is complicated by my particular diagnosis, which in addition to being chronic is what is known as an invisible illness. If you look at me on a random day, you can’t see the effect the cancer is having on my body, and on the days when it is evident I’m bedridden and therefore no one sees me. The reason I’m writing this is because I am blessed to know people who often ask me what they can do to help, and I haven’t really known what to say. I’m not at a point where I need meals or help cleaning or someone to sit with me during chemo injections. I usually end up saying “Prayer is good!” which is true. But nearly four years after the initial diagnosis, I have a part two for that answer. Prayer is still good. If you’re going to do one thing, pray for me. But if you want to do one more thing after that, please believe me.
Just believe me. When I say I’m in a lot of pain, believe it, even if you can’t see it. When I say I’m having a hard day and I’m scared about chemo, believe it. When I say that I’m not physically capable of pursuing the career that I love, believe it. Believe that I know my own body, that I know my disease, that I know my limitations. Believe that I’m trying my hardest and that I’m being honest with you.
I know that it’s hard, especially with cancer. Everyone has their own idea of what cancer means and what it looks like and how it breaks down a life. But diseases progress differently, people’s bodies react differently, and doctors pursue treatment differently. My essential thrombocythemia looks very different than another person’s leukemia, and that’s comparing two blood cancers. I might not look like the coworker or relative or friend you know who had cancer. I might not not even look like another ET patient.
I know that it’s hard. People who I know well enough to know they had good intentions have said really hurtful things because I “don’t look sick” to them. So please believe me. And if you don’t, keep it to yourself. Because honestly, it’s hard enough having cancer without being challenged to prove it by well-meaning people who don’t believe me.
I am not here to make general statements on behalf of chronically ill people, because it’s like when people say, “you’re a girl, what do girls like?” and I say, “It depends on the girl.” So this is just me. I’m not establishing some cancer patient position here, but I personally don’t mind when people ask questions about my condition. I’ve had people ask me about fertility, life expectancy, chemo, you name it. And I genuinely don’t mind when people are asking because they’re curious or interested or concerned about me. It’s pretty natural to have questions; cancer is weird and medically fascinating, and I have a somewhat unique perspective on it, as does any cancer patient.
But I can definitely tell when people are asking questions because they don’t believe there is anything wrong with me. Variations on “I don’t think you’re as sick as you think you are” have been launched in my direction on occasion, which is really just unhelpful. Also, to be completely frank, outside opinions of how sick I am are exactly 0% relevant to my daily life.
I can also tell when people are too embarrassed to ask about my cancer up front but they want to know, because they all have the same phrasing and intonation. It’s super weird, but the delivery is always identical, regardless of normal speaking patterns: “So, how are you [shifty eyes]…doing?” I usually just say that I’m fine, or sometimes to shake it up I make everything really awkward by overusing the word cancer. Like: “Oh, well, I still have cancer, because it’s incurable cancer, but the cancer hasn’t been too bad lately, as cancers go. Cancer.” Then I sing a verse of “I have C, I have C-A, I have C-A-N-C-E-R, yes I do,” to the tune of the classic Christian camp song “I am a C.”
I mean, I know I have cancer; it’s not like I forgot and if someone asks how my health is I’ll suddenly remember and go into shock. So if you’re curious or interested or concerned about me, just ask. And then believe me when I tell you how it’s going. It’s way less uncomfortable for me and probably you if you just say it.
And if you happen to know other chronically ill people who DON’T overshare about their lives and opinions on a blog, I would suggest you ask them what would help them. Ask if they’re comfortable with questions about their illness.
And to generalize just a little, think twice or possibly thrice before commenting on whether or not people “look sick” to you. If you could see it, it wouldn’t be an invisible illness.