Needing your husband to care for you

It is a hard thing to bear , needing your husband to care for you year after year and to see him have to give up so much to do that , to make the decision to put your needs first before other people, career, status, enjoyment. success, money , a life.

But harder still is to see how little support he receives, how little people really care about him, how when he has made the choice to love me and care for me, people do not seem to get it. They don't seem to see how stressed he is, how worried he is, how exhausted he is, how poor we are. Instead they demand he provides for them, meets their needs, cares about them too, runs around after them, engages in meaningless banter about their lives, punish him for not doing more for them, neglect his feelings and deny our reality. But never ask him about how he is, never ask how I am, don't even want to know how ill I am or how concerned he might be, how he might need help or support or kindness himself rather than just endlessly giving it to others. Do not understand the medical neglect. Do not even believe it.

Living with Severe ME means the carer is impacted too. We do not want sympathy. We do not want rescuing. We do not want patronising , denying or undermining. We actually just want sensitivity and awareness. Sadly this is all too often too much to expect or even hope for. It so rarely happens.

Mostly people go on without you. They act as if you do not care. They overlook you. They don't contact you or include you. They don't reach out. They expect you to be who you were before illness struck. Or to be stoic and strong. Only a few remain in genuine friendship. For that we are tremendously grateful.

Others get angry with you. They are at best superficial with you or do not even believe you. Mostly they just deny your reality and keep only minimal contact if at all. This is what is most hurtful. Not that people overlook me, but that people do not act with understanding or empathy to Greg.

It is not easy to stay in touch, to maintain relationships, we get that. It is not easy, but it is possible. It is possible to be interested, to find out about the illness, to find out what we are going through and to be kind.

The throw away comments on Christmas or birthday cards are the most annoying . 'Hope you are well.' Why do ordinary people not know that this is not an appropriate comment for someone with Very Severe ME who has been separated from normal life for 20 years, ill every single day? Is it that difficult to be sensitive, thoughtful, compassionate, caring?

If we added up the events we have missed, the moments of enjoyment we could have had doing the myriad of things we could have done together if I were well, our hearts would probably break from the sheer grief of it all.

But we do not go there. We seek for moments of love. We seek for moments of simplicity. We seek for moments of communion. And we seek to maximise them and be happy in whatever way we can.

To care for someone with Severe ME is not easy. It is not simple. There is no easy path through it. It is hard. It is painful. It is exhausting. It is lonely and it is disappointing, even boring at times. But nevertheless it is a gift and when given freely and with the intention to genuinely make a difference in a person’s life, there can be no greater gift.

I am therefore grateful beyond words for every moment we have lived together through this difficult illness, and I celebrate every triumph we have ever had in overcoming all the hurdles put in our way either through neglect, ignorance, deliberateness or abuse. The list of triumphs is many.