An Open Letter to the Medical Profession

Dear doctor,

I don’t know if we should be together anymore.

I’m tired of fighting. I’m tired of feeling like I need to put on my armour every time I see you.

I know you think that I don’t respect your knowledge, but I do. You know so much more about the human body than I will ever know, you can see things that I will not notice, you can interpret and piece together a picture in ways that I cannot.

And if anyone has a chance at making me better, at finding treatments or even coping mechanisms that work, it’s you.

But right now, something’s wrong.

Every appointment is a battle. A battle of wills, and a battle in power dynamics.

Everything I read about doctor-patient relationships, especially in the world of chronic care, tells me that I need to advocate for myself. I need to be assertive, to communicate what I need. But at the same time, I’m not supposed to let it become personal. I’m supposed to remain detached in this conference over my body and my life.

In short, I’m supposed to roar like Katy Perry and shake it off like Taylor Swift.

And I’ve tried. I have made lists before appointments, and refused to leave until I made my way through them. And I have remained calm. Even when feeling personally attacked, I have never raised my voice, lashed out or cried in an appointment.

I have been a model of what I am told to be, but it’s just not working.

And I don’t think it’s because you aren’t capable at your job, because I believe that you are.

But something has to change.

I’m just so tired. I feel so alone. And that’s not okay.

My body is doing crazy things. It’s been flipping my life upside down for years, and it’s scary and hard, and isolating and exhausting.

I get that. I expect that.

And I know that I have to fight all of those things. I have to roar at my body, I have to shake off what it throws at me and I have to work, hard, to live my life in a way that makes me happy.

I’ve come to terms with that. Or at least, I’m trying to.

But the thing is, I already have that dysfunctional relationship to work on.

I don’t need another.

You are supposed to be there, on my team and by my side, helping me manage my body.

I want to leave my appointments feeling supported, I want to rush to see you in the bad times, because I want to know that you’re there for me in this battle against my body.

But right now, for some reason, I don’t feel that way.

For some reason, not only do I have to battle my body, I have to battle you too.

I have to convince you to believe me, and then to help me. I have to push you to run tests and try new medications. And then I have to go home and mop myself up, taking care of the self-doubt and frustration.

And that’s not okay. That’s not fair.

Because really, we should be a power couple. My excellent communication skills and awareness of my body partnered with your knowledge and resources – we should be kicking my illness’s ass together.

And I don’t think it’s either of our faults, not really.

But I do think we need a change. We need to change the way we react and relate to each other.

We need to stop roaring – at each other, at least. Because if both of us are roaring, then neither of us can hear the other. Finding our voices is important, but so is sitting back and listening. And if we aren’t convinced at first, maybe we need to humour each other a bit. Respect that we each have a piece of the puzzle and we need to work together to make the picture.

We also need to stop shaking it off, just a little. We don’t have to like each other, or be friends. But we do have to support each other, and know that what we are doing matters. We’re a team, and teammates don’t just let each other go.

I don’t want to break up. I think we can make things work. But if we stay together, things have to be different. We both have to make an effort, and recognize that these things take time.

We have to truly to commit. Both to each other, and to our mission. We have to have each other’s backs and feels confident that we’ll keep pushing, keep fighting, together.

If you still believe in me, in us, then let me know and we’ll find a way to make it through.

But if you don’t, I’m going to start seeing other doctors.

Because I need a partner. I deserve a partner.

And so do you.

Sincerely,

Your patient.

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Crossing Lines

There’s some kind of invisible line. It’s located differently for everyone, and there really is no warning as to when it’s being crossed. But it exists, and it’s powerful.

Since I last posted, I crossed that line. More than that. I shattered it.

It was kind of a big deal.

A couple of weeks ago I headed to London, England with my family. I knew that I wasn’t strong enough to go, and I knew that things might get ugly. But it was my one chance this year to see my best friend – my brother, so I went.

And I prepared. I packed bags of snacks – both salty and high in sugar, depending on what my issues were. I packed electrolytes and braces, bought a neck brace for my flopping head, and my family rented a wheelchair with a head rest for the extra support.

I wore my strongest compression garments on the plane and even bought special compression gloves – just in case.

I brought my walker, in case I needed support to walk, but didn’t need to be in the wheelchair.

Even with all of that, I felt scared. It was strange, because usually I find myself exhilarated at a challenge. I tend to lead the charge on adventure.

But I couldn’t shake the feeling that I was close to something bad. Something dangerous.

I told myself that it was because I had been isolated for too long, and that I couldn’t let my illness and fear stop me from living. I pushed aside my trepidation, and went onto the plane beaming and excited.

I had no idea what I was in for.

Before going on the flight, I had been close to the line. So close, that I had started to brush against it here and there.

The line between okay and not okay. The line between sick, and too sick.

I’ve been in a lot of pain before. I’ve felt extraordinarily ill.

But most of the time, I’ve still managed to be me. The things that make me smile have still made me smile – albeit a weaker twitch of my mouth. I might have a shorter temper or a longer processing time, I might cry or grimace or lie silent, but I have generally been on the okay side of the line. At least for most of the day.

But this trip pushed me overboard. I was simply too sick. I wasn’t able to process anything, I was in a world of my own – a world of a rapidly beating heart and pain and exhaustion.

I lay in the floor, unable to move my limbs, unable to speak, being fed water by a straw.

I was terrified, not just of my body’s dysfunction, but of everything. My heart stuttered at noises. I didn’t want to be alone.

I was still there, and I could still see and still think rationally, but it was as though I was locked into a small corner of my mind. I screamed logic at the rest of my brain, I got excited at my few opportunities to explore the city, I was vainly horrified by my dismal reflection in the elevator mirror on my way back up to the apartment after an outing, and I was thrilled to be together with my family – but my body was louder and it didn’t seem to care. It was miserable and scared and couldn’t enjoy anything. It just wanted to go home.

I had crossed over from very sick, to too sick. My body was controlling me. It was simply too much.

There were a couple of times on the trip that I did manage to take back control. One moment was at lunch with some friends who are really family. As we were eating, I suddenly felt present. And it was so wonderful, we had an amazing time and I felt so happy. Another moment happened when my mother and I had just left the Royal Albert Hall, and I suddenly felt so present and was enjoying being out in the city so much that I talked my poor mother into pushing the wheelchair all the way back to the apartment in the rain, so that I could see more.

But for the majority of the trip I simply was not myself. I was too sick to be myself.

And so I turtled. I didn’t reply to emails. I didn’t write any blog posts. I didn’t reach out to my friends. I felt like I had nothing to offer. I was miserable and felt tainted. I felt embarrassed. How could I not be finding a way to enjoy myself?

And then, finally, it was time to come home. And as we drove to the airport I felt an immense pang of regret. I had been dreaming about this city, about this trip, for years. And I had spent the majority of it miserable.

But I also felt immensely relieved to be going home. Going back to a space that I knew.

On the flight home I drifted in and out of sleep, made faces at the broken screen in front of me, and felt myself gradually taking back control of myself. I tried to decide whether I was happy that I had gone on the trip. I tried to think of what I’d tell people when they asked, excited, ‘how was it? what did you do?’.

And my thoughts seemed to loop around themselves. I simply didn’t know. I was still so wrapped up in my body. I needed time.

My first responses to friends were that the trip was ‘complicated’. I wanted to say awful, but I couldn’t bring myself to. Not simply because I knew I was so lucky to have even had the opportunity to travel, but because I knew that, while it had felt awful, some wonderful things had happened. I just hadn’t been in the right space to enjoy them.

A couple of days later, my word changed to ‘crazy’. The friends who I talked to a couple of days after I had arrived back home got the benefit of a much cheerier picture. One with bad health, but great adventures too.

And just today, when someone asked me how the trip went, I said that I was really happy I had gone.

And I am. Now, at least.

It’s not that I’ve forgotten how awful I felt. It’s not that I’m looking at it with rose coloured glasses.

It’s that I’m not still feeling awful. I’m back in control. I’m not too sick.

And now I can look back, and think of those cool things that I was wheeled out for, those moments with my family, and I can remember them. I can savour the memories, and enjoy them.

I’m still physically recovering from the trip. Or perhaps that’s putting it too kindly. I don’t know if I’m recovering, but I’m still feeling the affects. I’m still very sick.

But apart from a few hours a day, I’m not too sick. I’m back on the okay side of the line.

And I don’t simply feel back to normal – whatever that is. I feel fresh and invigorated, both mentally and emotionally.

I have been reaching out to friends who I haven’t spoken to in years. I have finally started a project that I had been procrastinating for months. I have been singing, in small bursts, and coming up with all sort of ideas.

I’ve always hated the phrase ‘what doesn’t kill you makes you stronger’. I find it offensive, and completely untrue. Not every experience makes you stronger. It shapes you, certainly. But not necessarily in the area of strength. In fact, it could deplete your resources and exhaust you. Or it could make you hard, which is certainly not the same thing as strong.

But, while I still disagree with the phrase, I’m beginning to understand it a bit. I’m beginning to see how it can be true.

Because I crossed the line in London. I tipped over the edge. It was a huge ordeal.

But I got through it. I’m back on the other side, for most of the time at least.

And everything seems a lot better from here.

I seem a lot better.

I seem a lot stronger.