I’ve written about what it’s like being sick. And I’ve written about what it’s like being something of a public figure. But I wanted to talk about being “publicly sick.”

I chose to do this, I know that. I chose to share my illness, my life. But it’s never easy to see exactly where things are going to end up. I didn’t know I’d get so much attention. I didn’t know how people would react to me and my story. So I don’t think it’s fair to say I should have expected this.

It is not easy trying to be yourself and live your life when every man and his neighbour have an opinion about your body and your brain and even, actually, your soul. (Actually, as someone pointed out to me, that’s life as a woman as well).

Being publicly sick has taught me a lot about people. About how they react to extreme situations, about how they treat others – strangers, and their friends.

The main thing is this. People want to help. They think a lot of things are helpful. These things include

–          Diagnosing me

–          Telling me about the supplement/exercise/diet they think will help or cure me

–          Giving me things

–          Wanting to empathise

–          Wanting to tell me their story

–          Using my story to make a political point

The things I am about to say might make me sound like an ungrateful brat, and maybe I am one. But I feel more like I am so grateful that it comes unbearable for me.

Diagnosing

Not only do I have access to several very competent health professionals, right across the spectrum from gastroenterologists to naturopaths – I also have  access to Google.

I don’t need you to list my symptoms and tell me that I probably have xyz disease and I should go and tell my doctor (which amounts to be walking in there and telling him he doesn’t have a clue and has been negligently misdiagnosing me for the better part of two years).

Telling me about cures

Like I said, I have google.

Further than that: I am doing everything I can to get well. My ability to do those things is limited by my illness. My situation means I need to work within my very limited energy and within my very limited financial means. These things are frustrating enough without you telling me there is a hundred other things I could, and should, be trying.

These things probably mean I can’t take you up on that ‘miracle cure’ you’re talking about.

Furthermore, by telling me about this cure, you are presuming I have not done everything within my power to research my options. You’re telling me that I am wilfully choosing to be ignorant and unwell.

Giving me things

If I need something, I have learned to swallow my pride and ask for it. If I have not asked you for something, please, at least ask me before you I assume I want it. It is incredibly hard for me to receive it. That is because I feel so unable to respond. I have no resources to reply to your generosity – and by that, I don’t mean giving things back, because I know most people would see that I can’t and they wouldn’t expect that. What I mean is, I often am so physically and emotional exhausted, I cannot find the wherewithal required to even say thank you in any meaningful way. Thank you loses its power when you’ve said it a million times, and boy, have I. I’ve been so amazingly lucky over the past few months. People have helped me out so much and please don’t think I am ungrateful, I am just trying to express what this means for me.

I am amazed and grateful, but. Gifts stress me out. There’s no other way I can say this.

Wanting to tell me your story

Everyone has an illness story, whether it be them or their sister or their mother’s uncle’s cousin’s dog. Everyone has a story of how their sister had xyz disease and “it almost killed her” or “we did this and it’s all better now.” (See ‘Diagnosing’ and ‘Curing.’)

It’s not that I don’t appreciate your stories. But it takes me energy to engage with them, and unfortunately, right now, it’s energy I just don’t have. You’re not helping. I feel cruel but I cannot empathise with other people’s pain right now. I have barely enough empathy for myself.

Wanting to empathise

Again, as above. Everyone has a story and they might use that story to try and relate to me. At the moment, I have several people either emailing me or contacting the newspaper to say that they’ve had something similar to me and they want to talk. The thing is, (and setting aside that they probably want to diagnose and/or cure me) (god I’m a cynical brat), I don’t have the energy to listen. I don’t have the energy to email back. Many people are older and they leave me a landline number to call them on. I don’t have a landline, and I don’t have the money required to call them on my cellphone and listen to them empathise with me. I feel terrible because people are offering me support and I don’t have the energy to even acknowledge them. It’s a fucking awful place to be in. The more support is offered… the worse I feel.

Using me to make a political point

Again, you might say I asked for this. I deliberately made myself into an example because I was calling for change. Because I want the system to change, and I want attitudes to change. But taking my story without asking and using it as evidence to back up your opinions or politics is… clinical. It’s cold. It’s cutting the story off from the person. It’s taking my personal history and using it for your own agenda. And I’m not going to lie. That’s painful for me. That’s not me being political in my own right. That’s you using me.

(I’m not talking about Labour’s survey here. I chose to work with them).

Finally, here is a thing from Thought Catalog – A letter from your 11,721st Twitter follower. It’s brilliant, and includes such gems as:

“Or the time you were sick, and had a question about combining acetaminophen with your antibiotic. Now I don’t know you, so I couldn’t tell if you were being facetious or were using Twitter to seek genuine medical advice, but I thought it’d help if I replied authoritatively with my best hunch, even though I was completely wrong. I mean, worst-case scenario, I’m actually right, and you plan your self-care regimen around my immediate instinct. That’d be cool, right? I love the way social media connects us all.”

It’s unfortunate how much this resonated with me.

This has been a very negative post about something that is actually quite good, which is human beings truing to help each other, and I am sorry about that. But sometimes I get frustrated. I hope I don’t seem completely bitter and ungrateful. I am actually massively humbled that so many people want to help me in any way they can. And I know if you haven’t been sick it’s very difficult to understand how your offering support can actually make things worse. So all I’m asking, is that you think before you speak.