Living with chronic illness and disability forces us to make tough choices. To put our health first, even when that means missing out on special occasions, important moments, and big life steps.

Today, I’m supposed to be celebrating my grandfather-in-law’s 85th birthday. My husband’s extended family, who weren’t able to attend our wedding because of COVID restrictions, have finally made it here from Australia. I should have been on a plane to Christchurch this morning.

Yesterday, I realised that, while I would be just capable of doing the trip if I took a bunch of extra medication, what that does is force override the warning messages flashing in my brain. And doing that has major consequences to the CPU.

I’m not a fan of travelling. I’d love to say I’m adventurous, but that isn’t my reality. Living with chronic illness – managing it day-to-day – is an extremely delicate balance. Do too much, change or miss meds, sleep in a different bed, eat different food….basically anything outside of my carefully crafted routine can throw my body into a tailspin. Not to mention my brain.

I’ve yet to meet anyone living with chronic illness/disability who does not also suffer some level of mental illness. Depression, anxiety, eating disorders –  losing your health and independence can have a serious impact on your emotional wellbeing.

I can’t speak for the experiences of people who were born with their condition. I’ve had depression and anxiety most of my life, sure, but I was physically healthy until 2012. I had plenty of energy, plenty of life ahead of me, and a lot of big dreams.

It feels like I’ve grieved for that past self many times, but the wound never really closes. Every time I have to make another tough decision, I feel like my illnesses steal another part of my life, another experience, another hope, another dream.

I hate disappointing people. I hate having to say no. I hate the sadness and the guilt I go through every time I bow out, even of something as seemingly simple as a phone call. Let alone an important family event I was really looking forward to.

At the moment, it appears I’m having a flare, and that I’ve taken a few steps backwards in my concussion recovery. Even though it’s been over a year since I hit my head (the second time), I’ve developed the same intense headaches, neck pain, photophobia, hyperosmia and fatigue I experienced then. To try and manage this I’m seeing a specialist physio, having acupuncture, getting my glasses updated after an optometry assessment, and seeing my GP at least once every couple of weeks. As is usual with these things, treatment results in feeling worse before you feel better. It’s a lot for my body to handle.

And it’s a lot for my brain. My mood could be described as existential pointlessness, if I were being dramatic. Really, as I said, it’s grief. Plain and simple.

While I’m talking about body and brain here, I don’t actually make much distinction between the two. I think we should treat ourselves (and be treated by medicine) as one whole being. Our mind is not separate from our physical existence. That’s not to say I subscribe to the idea that my pain is all in my head and so too is the ‘cure.’ It’s that I recognise my emotional triggers have physical impacts and vice versa.

My ‘fight/flight/freeze’ response has been stuck in the On position for a very long time. I consciously or unconsciously feel and behave like I’m in danger. I don’t breathe properly, which is kinda vital to living. I get restless, tense, and jump three feet when my own husband says hello in our own house.

Living like a rabbit under threat has a bunch of physical impacts. When we’re stressed, we release cortisol because the body thinks we need to a boost to get away. When this hormone drip gets left on, it leads to adrenal fatigue. I’m acutely aware that this level of anxiety makes all of my physical symptoms worse. And if I have to go into situations where the stress and anxiety is pushed even higher – like travel – I will suffer, mainly afterwards. It can take weeks to recover.

I think the important thing I want healthy people to understand is that none of us chooses to get sick. I didn’t choose this life; it happened to me, and now I just do the best I can to manage, navigate and improve it as much as possible. Sometimes, that means letting others down. Sometimes, that means I feel like I let myself down, that I should push harder, that I’m worth less as a person, friend, wife.

But none of those feelings are true. Because the thing that my illness cannot change is the size of my heart. And even if I cannot be with people, they are always in there. Being sick may seem like being selfish, and yes, sometimes it means putting myself first. But that does not change the depth and breadth of love I carry for those around me.

And that’s something my illness will never, ever steal.