Grieving Your ‘Good’ Health

By Rhia Lynch

Illustration by Alexandra Ohrim

There are a few classic phrases people will say when you tell them you have a chronic illness. Around nine times out of ten, they will kindly inform you that you are ‘too young to be so sick’ or ‘you don’t look sick’. Or, my personal favourite, ‘Get better soon!’. Now, I do recognise that these are usually said with the best intentions; however, that rarely makes them any less infuriating to hear. 

One evening, my mum was trying to get me to vent with her about these phrases. Despite being sick for a couple of years at that point, this conversation made me realise how much had changed for me. 

“Do they not know what chronic means?” she said, “You will be sick for the rest of your life - there is no ‘getting better’.”

I knew what chronic meant. Yet, I had never given myself time to think about it. I had never opened that book, or box, or jar - or whatever metaphor you prefer. I had never properly looked into it. All of a sudden, the weight of the word fully hit me, and everything became different.

I was sick, and I was going to be sick forever. My life wasn’t threatened, and for that, I was grateful, of course, but the life I was going to have would be so different than I had thought. That was terrifying.

I was almost exclusively bedbound from age thirteen to eighteen. On bad days, I couldn’t feed myself, or get to the bathroom without help, and on good days I would use a wheelchair. On my best days, I could walk downstairs, only to collapse on the couch and have to sleep there for the night. 

My illness means my heart rate skyrockets with postural changes, and I usually pass out. When I do manage to stay conscious despite the tachycardia, I feel horrifically dizzy and weak. I can’t raise my arms, my blood pools in my legs, and my ears pound so loudly with the beat of my racing heart that every noise around me is smothered.

That would never go away. I would never again be able to ride a bike, to dance with my friends, to bounce on a trampoline, to run with my dogs. I had lost simple things that people never even think about, too. I could never stand in a queue, I could never carry shopping bags, I could never brush my hair. 

My whole future would have to be adjusted to fit this burden I now carried, one I never wanted and never did anything to trigger. 

I think everyone, at one point or another, has been afraid of getting injured, losing their freedom, or suffering with pain. It’s a right of passage as we grow up and realise how harsh the world can be.

What people don’t usually think about is that those things can just… happen. 

So, what do we do then? How do we grieve our good health, and survive with whatever we are given instead?

For me, the most challenging part of being chronically ill was not having my freedom or my independence - two things I hadn’t even had a chance to develop before I got sick. 

I would feel humiliated if I saw someone from school while I was in my wheelchair. I would be angry if a friend surprised me with a visit and I didn’t have time to prepare my fake persona of health and happiness. I couldn't accept this version of myself and I didn’t think anyone else ever would.

Aside from my mum, I never, ever let anyone see how sick I was. Honestly, even to this day, those closest to me don’t fully know what life looks and feels like for me. I hide it, even on days when it means using all of my strength to appear ‘normal’ for a short time and then ending up back in the hospital or bedridden. 

People work hard to fit in, which only makes it worse when our differences make us feel so distant from everyone else. Our minds can be so small and so judgemental of ourselves. I was - I am - no different.

Those who knew me as a teenager would swear I was fine. They would talk about how I just didn’t like school or was lazy or shy, and I let them. I was too scared for anyone to know the truth. A few times I tried. I made a few Facebook posts and an old Instagram account to talk about my journey. But it was too hard; they didn’t last long. 

How could anyone ever see such a vulnerable side of me, but also know that I was strong and brave and just as much of a person as they were?

The truth is no one can feel the way you feel, even the people who have the same issues and the same illnesses. Others will never truly understand your individual struggle. But they can try, and more often than not, they want to try.

Needing help does not make you weak, or shameful, or cowardly. You are not ‘losing’ a battle, you are not ‘succumbing’ to your illness. You can be strong and proud and brave - and you can need a little bit, or a lot, of extra support. 

While, unfortunately, there will always be people with doubts or judgements and people who will offer their time but never truly show up, there are also people who genuinely love you, ones you don’t realise or ones you haven’t found yet. 

Those people are the ones you keep. They will be brave when you can’t, they will wait in the queue for you, they will carry your shopping bags and they will brush your hair. Even when we feel so alone, we aren’t. There is support out there. There are and will always be people who know that you are worth any extra effort you might require.

Accepting change is the hardest part, especially when that change makes you feel so vulnerable. It is not something other people can do for you, which is ironic. If the best way to accept yourself is to embrace help, then it’s worth it.

If you’re in the depths of health struggles, the most important thing you can do is be patient and kind to yourself. Rest and recovery are not lazy, they are necessary. You are not missing out; you are prioritising yourself, which is what matters most.

People often say ‘one step at a time’, but even that can be too hard. A step is progress, and sometimes progress is impossible. Sometimes it is simply one breath at a time, one beat at a time, one day at a time.

And tomorrow is a new day.