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Living with an invisible illness: ‘I feel I have robbed my husband’

Louise Boyle is a Dublin native, putting down roots in Portlaoise with her family almost 20 years ago.  As a person with disabilities, and a mother of a child with a disability, Louise’s interests revolve around advocacy, community and fundraising for various charities

My parents set an almost impossible standard for me when it comes to relationships! They are 44 years together and ridiculously in love.

They support and care for each other, and are utterly devoted to making each other happy.
There is a kindness and compassion between them that’s like no other. And they make it look so damn easy.

All my life all I ever wanted was a partner to look at me the way my father looks at my mother.
I expected the Disney Prince Charming and the whole “Happy Ever After” fairytale.

Life does not work that way.

My husband is no saint. He has his flaws. He is fallible.

When my illnesses got worse, and he realised our lives were changing, he took it hard. He grappled with the ever expanding load placed on his shoulders and felt hopeless watching me suffer.

But without him, I would be lost. My life would be infinitely harder if he were not by my side.

Nevertheless, I cannot stop myself from constantly wondering why he stays.

What does he get from this relationship, from his broken, damaged wife? Is he just here because he’d feel guilty about leaving his “disabled” wife? Is he worried he’d look bad? Does he resent me? Why does he stay when he can leave and find someone healthy that he can be happy with?

My struggles are MY struggles, certainly not something he has to put up with. So why does he?

When we married all those years ago, he signed up for a life with a (relatively) healthy woman.

I now watch as my husband’s role evolves from partner to carer.

I have robbed him of the life that we should have had. That HE should have had. He has been cheated because of me and I live with the guilt for the burden I am to him. And that guilt has corrupted our relationship,

I’m not an easy person to be around on my “good” days, and on my bad days, I’m not even remotely nice. There are times where my pain level is just too bad to smile through and inevitably makes me very short tempered. The chronic fatigue I feel causes me to be unable to take part in many activities or family days out. At times, I am simply too exhausted to even hold a conversation with him so I just snap when he tries. And then there are the physical interactions that are just too painful.

The devils on my shoulders that are depression and anxiety start whispering these questions to me, telling me he is going to leave. So I end up vying for constant reassurance that I badly crave. But yet, I push him away and completely isolate myself.

So, why does my husband stay?
“Because I love you.”

He loves me even when I hate myself. When I push him away. When I snap at him for no reason. He loves me even when I shut myself away and wallow in self-pity. When I have just given up.

He simply loves me.


Don’t ask me! I am still trying to figure that one out.

It’s hard to accept love when you know that same love is hurting someone you care for. It’s hard to accept love when shame blocks us from seeing and honouring that love. And it’s absolutely impossible to accept love when you don’t feel truly deserving of it.

I know I am lucky. I do. And maybe someday I’ll be able to silence those devils on my shoulder. For now, I am working on it.

One thing that I do know: I found a man who looks at me the way my father looks at my mother.

SEE ALSO – The ongoing battle of living with an invisible illness

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