Oh, is my hair loss from chemotherapy inconveniencing you?

For those of us who take forms of chemotherapy for our disease, it’s a pretty big deal.

It’s bad enough that we get flak from the cancer community for using the term “chemotherapy” when explaining our biologics, when that’s what it actually is! I get that some of us aren’t on the high doses that cancer patients are on, BUT IT IS STILL CHEMO AND IT STILL HITS US HARD. It’s not a competition to see who’s on the worst drug or dosage.

I’ve been on biologic infusions for a couple years now. That means that I willingly consent to toxic chemicals being pumped into my body in the hopes that it makes me well. Sometimes, they do. I have unfortunately been on the other end of that a few times. The last time my body didn’t like chemo, the backlash consisted of multiple heart attacks and an eight day stint in the ICU.

It’s not a competition, so don’t tell me the chemo I take doesn’t have a toll. I get nauseated and vomit for hours. My body turns to lead and I have to sleep like the dead for up to 20 hours sometimes, just to recoup. AND my hair falls out.

Its gotten better over the years. The first time I went on chemo it came out in large clumps, to the point where I had to cut my hair short to hide the gaps. These days it doesn’t fall out en masse. But it does fall out! I have strands all over my floor, all over my pillows, and all over my bed and sheets. It sticks to my clothes, and it stands out cause I’m a redhead these days. You really can’t miss it.

It makes me very self conscious. You don’t need to tell me my hair is everywhere, I KNOW. No one knows better than me!

Most people are pretty cool about it. Sometimes they pick it off me discreetly, or mention I have a chunk sitting on my shoulder. I blush, take care of it, and we act like it didn’t happen.

You know what’s not ok?? Acting like you’re put out because my hair is in your vicinity. I’d love to not have my hair fall out, but I didn’t choose to be chronically ill, and I certainly don’t love being on chemotherapy. Have some fucking sympathy or compassion. But saying “Ew your hair is everywhere” or refusing to touch things in MY room because the hair “grosses” you out… Like are you serious?

How entitled do you have to be that you shame me for something I can’t control and hate about myself?!?! That shit is not ok. And while in my naivety I may have put up with it in the past, I will not longer.

No one in any circumstance is allowed to make you feel bad about yourself or your circumstance. EVER. That shows their insecurities, not yours.

So that will no longer fly with me. Nor should it for anyone else.

What my disease really took

I’m going to be 34 this year, in just a few short months.

Life right now is different than how I imagined it ten years ago.

Life is different than how I ever imagined it.

I don’t think anyone sits and wonders what their life would really be like if they were ever diagnosed with a debilitating disease. Sure, we make idle remarks about how hard it would be, but no one ever truly believes that it would happen to them, or a loved one.

But then it does and the world turns upside down and everything you knew or wanted fades away to a memory. It sits in a dusty picture frame on a forgotten shelf in the back of your mind along with all the other things you’ll never accomplish.

I used to entertain a lovely dream about meeting someone. Or maybe I already knew them. But in this dream time had stopped and we had realised our perfectness together, and so that all was right in the world. They thought I was the most beautiful creature, just as I thought they were as well. We would sit together in silence, holding hands, and smiling in the knowledge of how lucky we were that we had found the meaning of life.

Then when I got sick my dream started to change. Now it was that this person didn’t care that I was ill, and just loved me all the same. When they looked at me all the pain and suffering would melt away, and I would no longer be a girl who was sick. I would just be a girl. A girl who a boy fell in love with.

I don’t let myself think about that dream anymore, not even the newer one. I look in the mirror and see the face that everyone else sees, the face that he wouldn’t want to see. 45 pounds of steroid weight around my belly, legs, bottom, and face. A pain that never goes away, even when treated with a smile. An air of sadness that I can’t hide no matter how optimistic I act. Tight and shiny purple knuckles, legs covered in black and purple varicose veins, a body that rebels against itself at every turn. It’s not what anyone looks for in a mate, I know. I don’t let myself entertain the dream anymore.

Instead I keep my days full. I keep a tidy house, I cook and bake for friends who want it, I play with my cats and feel comforted by their never waning love and devotion. I feel happy for my friends who have found the life I yearn for but can’t have. I congratulate the news of new life, of new families, of love that was meant to last for someone else.

But I don’t let myself think about what I’ve lost. The part of my disease that no one realises is the worst. The loss that is never talked about because it hurts to wonder about something I can’t have.  The someone I will never have. What my disease really took. The one hope I’m not allowed to dream about. The life I lost when I got sick.

If you would like to help me stay on my feet and live happily and not homeless, please visit my campaign and make a donation to my fund. Thank you.

Christine Lilley’s Life Fund