Expectations: The Chronic Illness Saga

Let’s highlight something, okay?

Chronic illness means it is life long. It persists for a long time or constantly recurs.

This means that whilst I wish my IBD would sod off at times and just leave me alone, it simply does not do that.

I spent alot of time in my first year or so with my disease, wondering when it would calm down and just give me space to breathe. And whilst I have had some good stretches of being minimally symptoms free, I still have my disease. It has not been ‘cured’, it is being managed and it is always thinking of new ways to fight me.

And whilst I had good and bad days, it soon became normal that the bad days would soon over take the tally of good days, turning a a bad stretch into a rough patch. Those patches required hospitalisation.  And in those moments, people knew I was sick. Sick enough to seek medical attention and my disease would need an expert hand to manage.

There would be a nice circle of fulfilment – I would be sick enough to be in hospital, I would look ‘the part’ despite also feeling the part ALOT, I would get my new treatment, I would be discharged and somehow I would ‘look’ healthy again. As soon I looked healthy again – most of time from weight gain, thank you steroids! –  people would ask if my illness was ‘gone’.

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insert hard laughter here

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There is a certain expectation that because I have an illness that I need to always look sick.

Well the truth is, I don’t always look sick.

My face, my body, my smile does not always let on what is going on inside.

Whilst I could be smiling on the outside, I am full of pain and nausea and stress inside.

Whilst you tell me to do more to help myself, this feels like ugly snips; words meant to belittle how hard I am actually trying to just do everything else that everyone is doing.

Whilst I get to leave work early some days, you don’t see the anxiety and worry my appointments give me. You don’t see how being different, but not working all day like I ‘should’ do, makes me feel guilty. GUILTY FOR BEING SICK, WHUT?

Whilst I walk purposefully around the hospital, you don’t see the flashbacks to all my horrible times being here. You don’t have memories of fighting for your patient rights or spending days and nights alone in a room.

Whilst I sit and try my best to relax as my blood is taken or my cannula is placed, I am fraught. Forever thinking ‘this could be the tipping point, it’s happened before, why not again?’

What do I expect of myself as a ‘sick’ person?

I expect alot of myself.

I see my illness as something that is ‘negative’ and something I must compensate for. In all aspects of my life. Work, social life, my relationship, with my family, with my attitude towards the world, with my personality.

I expect to work, full time and be the best. I push myself and this sometimes back fires.

I expect to continue to blog full time, around my job. I find myself feeling guilty for missing a deadline; even if its one I’ve set myself! I expect myself to keep up with SoMe and always find something to say. Lately, that’s been really hard.

I expect myself to do all the smaller things on my to do list – cook, clean, look after myself, dress well, do my makeup; basically make an effort. Sometimes, all of that is not physically possible, let alone mentally. Things have to slide.

I expect a fuck ton of myself and I don’t take it easy on myself.

I expect to live well with an illness, and never let it beat me.

But you know what? It does beat me sometimes and that’s not a bad thing. If anything its good! It’s a good learning curve. Life with a chronic illness is not a piece of cake and it is not the same for everyone. My strengths are other’s weaknesses, and vice versa.

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Right now, I am in a good place, chronic illness wise. My IBD seems to be controlled by Vedolizumab quite well. My liver is being monitored by a Heptologist and my IBD nurses are a phone call away. I am feeling good, well in fact, for the first time since I relocated 18 months ago.

Feeling like that, throws up some emotions that I’ve always struggled to deal with.

I’ve felt well before and within weeks, I’ve been admitted to hospital. Or I’ve needed to have surgery again. Or I’ve found out my medications are failing and we need to switch them. Or I loose my job and my anxiety goes through the roof. Or I just find the feeling of being well – after battling being unwell for so long – too much to handle.

Right now, I’m on the cusp of finding it too much to handle.

But I am taking my anti depressants, I am ensuring I find some joy in every day and I am trying to get sleep, keep hydrated and keep my pain to a tolerable level. That is a fine balancing act, something which only take a small slip to slide into a depressive mood.

This year, I’ve been learning how to relax – not only my body but my mind.

I can’t control my disease. I can help myself manage it better but I can not control it. This is something I’ve had to learn and learn the hard way. I willed my body to fight after my first surgery but ended up loosing and letting them remove my colon and creating my stoma. And whilst life now sans-colon is better in terms of quality of life, in other ways it’s not any easier. I’ve willed my body to try harder to be better and to just work, but that has been in vain. I can’t control my stoma anymore than I can control my disease.

What I can do, though, is change how I feel about it.

Feeling positive and accepting that this life – life with a stoma and being on medication to manage my Crohn’s disease – is the best it can be right now.

Everything else, just fades. Or it should fade.

I’m working on that.