A year ago a friend passed away. I didn’t know her very well but she was one hell of a person and she affected me incredibly deeply. I’ve wanted to write about this for some time but I haven’t out of respect for people who were closer to her that might be reading this. I hope if they are reading, that they’re ok with it at the very least, or find it heart warming what she did for me.
When I was severely sick and bedridden in early 2012, like most people in that situation, I got very bitter about it. Why me? I thought. I felt alone, scared and angry. I was finding that doctors didn’t know what to do with me and treated me like I was imagining being so ill. I couldn’t understand why they had so little compassion for someone who struggled to feed herself with metal cutlery, or get to the bathroom unaided. I was surprised at how my friends dropped away, at how I’d get comments like ‘we’re all tired’.
I’d go to the doctors and the first thing they’d do was to rule out cancer. At least it’s not cancer! People would say. I started to think (I was in bed 24/7, and couldn’t even watch TV, I had a lot of time to think). People with cancer usually get a quick diagnosis, after months and months of tests, I was none the wiser. People with cancer get respect from doctors and treated well, because they’re going through this horrible, frightening, life changing thing. I got none. People with cancer get offers of help from friends and family, offers for ‘chats anytime!’ get well cards or offers for housework, or dog walking, or just to visit to say hi, you’re not alone. I got nothing. For treatment people with cancer get everything they need, my friend even had most of her treatments done at home. I paid thousands of pounds for mine, and had to go several hundred miles for it.
It’s not that I particularly wanted someone’s homemade casserole or a card with a funny slogan about nurses. I didn’t want people running marathons wearing green for Lyme research. It’s that I wanted recognition that I was going through the worst time of my entire life, I was in incredible pain and experiencing suffering I didn’t know was possible. I had friends who lived 10 minutes down the road who didn’t come to see me. I was baffled, disappointed and lonely.
Doctors didn’t know what to do with me. There was no plan on how to get better. I was left to rot in my bed.
I wished I had cancer instead.
Even the possibility of dying seemed like a relief, the idea that my suffering could end was all I wanted. ‘Dead or better’ was my goal, as I couldn’t continue the way I was. I became resentful of people with cancer, of the support they got, from friends and family and the wider community. The help and respect they got from doctors. When I was suffering so much, death seemed like such a relief.
Then my friend got cancer. She was a fairly popular kind of person and everyone rallied around to support her. I watched from afar. Things looked good for her, she reported that her chances were good, she’d have the proposed treatment and then probably go back to her normal life. She kept her job. She started chemo, and although I think she was hiding a lot of the bad bits, she seemed ok and positive. On chemo she would have good weeks and bad weeks, and on the good ones she’d do quite normal things like cooking and going to the shops.
I was jealous. I was beyond jealous. I’d never felt jealousy like it. I would have done anything for ‘good weeks’. To be able to ever cook a meal, or go to the shops. I hadn’t left the house, hell I hadn’t even left my bedroom for anything other than doctors appointments in months. There was no job waiting for me on the other side. The sheer quantity of support she had was overwhelming. I’d never seen anything like it. I tried to tell myself it’s because she’s a great person and well liked, and that I’m pleased she’s getting so much support and well wishes. But deep down I just thought, why wasn’t I getting it? I’m a nice person too. I have friends too. Why doesn’t anyone care about me?
The difference was that she had cancer and I had a poorly understood controversial disease that most of the public has never heard of. I wished I had cancer instead, then I would get all the support I needed, right? Then I’d feel better, right? Then doctors would treat me better and help me, right?
Through this I was still talking to her online. We both had a lot of time on our hands and we played scrabble together. We talked about how the following summer we’d both probably be better and able to go to picnics. I did enjoy talking to her, and I hid my feelings completely. I knew although they were understandable, they weren’t healthy feelings to have, and I definitely shouldn’t let my friendship with her suffer because of them.
Then, out of the blue, I heard some news. The cancer had spread, and suddenly, it went from planning for future trips and picnics, to planning hospice care, funerals and wills.
I was in shock. I completely withdrew emotionally, vanished from the online groups we were in, and buried myself in other things so that I wouldn’t, couldn’t think about it.
I was jealous of someone who was now going to die. That took some processing. Did I want to die? Dead or better, did I still want that? I didn’t know. I was a whirlwind of emotions, and I just blocked it all out. During that time I had improved quite a bit myself. I’d gained a Lyme diagnosis privately and started treatment. I was up and about a lot more and could do things for the enjoyment of it, not just because I had to.
In April 2013 I was at my mum’s in France. I’d managed the travelling and had spent a few days sitting in the glorious spring sunshine, surrounded by nothing but a gentle breeze and the sound of the birds. I went indoors and turned the computer on and there was the news I was dreading. She had died.
I pretended like nothing had happened and walked down the hall to the guest bedroom. I shut the door behind me, fell onto the bed and cried and cried. I cried like I hadn’t cried in a very long time. I cried for my friend, her family and friends, but also for myself. I cried because she was dead, and I was getting better. Because she had cancer and I had Lyme disease, she was dead and I was just starting to live again. I’d be going to picnics that summer and she wouldn’t be. She wasn’t going to get another chance at life, but I got one. I had to fight tooth and nail for it, and pay for it, but I had the chance to live. For the first time since her diagnosis, I was no longer jealous of her. *I* felt like the lucky one. And I felt so incredibly stupid and wrong to have ever felt jealous of her cancer in the first place. I felt so bad for the people she left behind, and I looked at my partner and mum and realised for the first time I think, that my illness wasn’t just about me. They suffered through it too.
People do die from Lyme disease, no one knows how many because it’s so misunderstood it isn’t considered as a cause of death. From people who know they have Lyme, it seems that about half of the deaths are suicide. People kill themselves because living with Lyme can be so unbearable. It’s such a waste, for a disease that can be treated. I am so incredibly lucky and thankful to be here.
I still cry now when I think of my friend. Because she made me want to live, really, really want to live, even when the Lyme made me want to die. She made me feel lucky, despite not getting the support and recognition for my illness, despite the physical suffering, lucky that I’m alive and still able to fight for a future. Lyme patients should get more recognition and the support we deserve, we should have the level of healthcare on the NHS that other comparable conditions have. But at the end of the day, with the right treatment we have a good chance of not just staying alive but living, isn’t that more important than get well soon cards, casseroles and charity marathons?
Thank you, D.
For someone I didn’t know very well, you had such a huge positive impact on my life. I couldn’t tell you while you were still here because I was so overwhelmed. But I hope you now know how thankful I am that you were a part of my life.