Lover Turns Carer - ' The condition itself is seen as a separate entity.'

 Lover turns Carer.

Many relationships feel a strain when someone falls ill, breaks a bone or has a surgery. These caring acts are something we do for our loved ones, we bring them soup, pain medication and give them space to heal. But what happens when it never actually ends? There's no end date in sight and life completely changes. 

Through out my years of being in support groups I've seen partnerships break up and we know statistically men leave relationships when women are no longer performative within their house duties, appearance, sexually and in social settings. That isn't to suggest males that become sick don't get left, they do because they no longer serve the societal role of being the bread winner and the muscle within relationships.

Truth be told chronic illness is one of the biggest tests relationships will go through, dynamics change and the relationship has another forever visitor. Ones independence is lower or non existent at times of flares of the chronic illness that invades the individual person. 

Whilst it is an individual condition; only one person has the condition it isn't an individual experience. It is a shared experience; it can be a catalyst for growth and closeness concreting the relationship or it can be met with distain, resentment and regret. There is a distinction that i find to be the main driver in these successful relationships, that the condition itself is seen as a separate entity. 

For example "It's sad that you can't go out to dinner anymore." Or, "It's sad that your condition prevents you from enjoying time at a restaurant." It is the clear distinction that the condition itself is the prevention rather something the person has control over. 

At the start we would both share our annoyances and hardship directed at this entity, fuck FND and fuck POTS we would say. It creates this gap that has no space for personal blame. It's allowed open communication of the struggles with the conditions i live with and no one feels bad for sharing their grievances.

There is no space for blame or words of try harder, if you did this maybe you'd get better. Rather it's this radical acceptance of what is, life is now changed due to chronic illness and how do we live life now with this entity that is chronic illness.

It was actually quite easy for us to adjust, myself and my partner aren't social butterfly's and the thought of a busy restaurant makes us feel queasy. We are at heart home bodies, recluses and antisocial people, we are each others best friends. So we didn't loose out on any real big changes within our lives. There would be no "where's Nadeen" if he were to go out; because he never did. 

We also never assigned tasks for one another like cooking or cleaning they were shared tasks, one person being the main source of income albeit I was before I became sick. We turned societal norms around my partner; the main parent and caregiver for our daughter and myself the worker. We never really did set or assign ourselves to certain identities normally seen in heterosexual relationships. 

When chronic illness hit there was no animosity of what I could no longer do, in fact he did everything. He did the household duties, looking after the children and the added task of caring for myself in the heavy onset period. Showering me, taking me to the toilet, helping me walk to the lounge room, trying to fed me whilst I was so defiant because I had no hunger signals and eating caused symptoms to go into overdrive, he gave me my medication and everything else that I needed. 

If you're reading this and think your male partner never could because males give the illusion they are ill equipped to clean or cook I assure you it's bullshit. My partner has quite severe ADHD, he cannot make appointments, remember where his glasses are whilst there on top of his head or remember where he set his phone down to find later in the pantry. It's a beautiful dance of a fumble through life whilst frustrating for himself at times; he stepped up to the plate and delivered more than the average male would. Weaponized incompetence; is bullshit.

It was hard for him, i won't lie he felt like he had to hold it all together for myself and the children; all smiles whilst he was screaming inside, not with anger with deep sadness. He felt at the time he had lost his best friend and I would be forever in the onset period. He accepted this may be life for now, he smiled while hiding the fact that it crushed his soul. For him to see me in such a weak state, unable to converse with him and there was nothing he could do has imprinted a scar. 

I remember so vaguely one night I was in such a state after a seizure and I was crying the kids were off in their bedrooms and he just held me and we both cried. No words were spoken just this understanding of shared pain, anguish and sorrow. I knew in that moment nothing could rock us, he had hit our lowest, the biggest test and he wasn't ever going to leave. 

I have to say it was almost easier in the beginning because as I started to stabilise a bit after time and rehabilitation it came a test for myself to let go of independence. Being previously quite hyper independent I had to give up what I thought I could do. I used to take pride in the fact that I didn't need help opening a jar with one hand and other tasks and now I was finding myself on the floor mid cooking. He would watch over me as a stand in for most of my activities because he could predict the drop before I could. "Let me take over you've done good" and I'd scold him but after a minute or so I was rendered completely unable on the floor feeling like I've been drugged. It was hard to give away my illusion of newfound independence, and due to C-ptsd I can find myself untrusting to give my power away. However, I'm grateful that I can use this as growth in regard to my hyper independence and C-ptsd. 

The area of connection can be hard at times because I need a lot of rest in between tasks so a big chunk of our days I am out in the lounge room alone. Him knowing that conversations are taxing with my limited energy. We have had to give up time together during the day so I can get through the day itself. This closeness at times feels so far away and both sorely missed. However we have dedicated our time away from the children, just for us for a few hours at night. We cuddle, watch shows, talk about stuff and we reconnect and fall in love again each night. 

Another thing about being chronically ill is that my cognitive functions are at times so low that we can't joke around like we used to as much. The jokes go over my head and I ask him to explain it but by that time the jokes ruined. I also used to have some really quick wit, something he adored. Every so often I pull one out and he says "yes that's my best friend she's back" it's only brief but he cherishes it. I also cannot physically be in a room to hear him sing so he's adapted and sends me in audio format; his voice is so beautifully loud it can cause an earthquake inside but, in audio i can still hear him sing. 

My partner is so in tuned into my body more than I'm in tuned to my own. He often will say in appointments or if people are over "she's done now", he has such a clear understanding of my conditions due to the lived experience of a carer. And due to certain symptoms that could overlap with our daughter's autism I have been able to vocalise situations that cause me discomfort would cause discomfort to her. 

It was her birthday and we were getting ready for her to finish kindy, he blew up coloured balloon's and as the room filled my speech went, he told me to remove myself and rest for a while after I regained my speech I said to him "if she has a meltdown when she gets home it's because the balloons are overwhelming", and she did. 

It's certainly been a wild ride we've grown in so many ways, we have a deeper understanding of each other that just keeps growing. We have adapted our lives to suit my conditions. 

My eldest daughter said recently "Mum it's so weird that it was so scary at the start but we are so used to it now it's just normal to us." 

The qualities of a lover that turns carer in my opinion is someone who,

- can adapt in situations

- doesn't care about societal norms.

- doesn't care about what others think.

- Is a home body, recluse at heart.

- somebody that has a growth mindset.

- able to critically think about conditions.

- someone that can be spontaneous with tasks 

- someone devoted and highly in tune.

- someone that is caring by nature.

- can advocate.

- can stand by in support with patience

- someone who can separate the condition from the person.

-open and honest.