Guest Post: Living with Someone Living with EDS … by Charlie

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People suffering from EDS have much to deal with, aside from the obvious constant aching and joint pain. Mentally and emotionally they are exhausted: Dealing with the frustration of not being able to walk to the shops, cook a meal or even sit up in bed for any length of time without suffering terrible pain; coping with feeling useless or invalided when they used to be so active; feeling alone and alienated from their former social circle because they can’t work or get out like they used to. The list, unfortunately, goes on.

I am married to an EDS sufferer – the regular author of this column – and through her infinite compassion she asked me to write about what that entails, to maybe allow some other partners or carers of sufferers something to relate to or take comfort.

I had the hardest time coming to terms with my wife’s condition. I’m ashamed to say I wasn’t as understanding as I could be to begin with. I’m old school in the just-man-up-and-walk-it-off kind of ignorance that a lot of people possess. You know the saying ‘I used to have to have two broken legs before I was allowed off school’? Well I once hobbled around and went to work for two days before someone made me go to hospital where I discovered I had actually broken my ankle and was doing myself no favours at all. So I spent a long time being less than sympathetic before we discovered the condition.

Coming home from work to find her still in bed because her back hurt would frustrate me. Constant requests for massages when I was tired from having to work all day annoyed me. Financial difficulties as a result of me being the only wage earner because she couldn’t work through the pain made me resentful. I look back and see myself as being a selfish bastard, but at the time I didn’t understand that there was a problem.

As time went by and we were able to recognise the problem for what it is, thankfully I did realise I was being a git, and realised that all the frustration and helplessness I was feeling was the same but more so for my poor wife. Only she didn’t have anyone to moan to about it.

I had to realise this was something we couldn’t have prevented, we couldn’t have foreseen, and we just have to deal. I have to be there for her, emotionally helping as well as physically lifting. And me being there for her means she has the energy to be there for me.

I hate having to do the cooking and cleaning all the time as well as having to go to work, but I know she hates that I have to do it too, so the resentment melts away. I’m happy to give a massage to her aching ligaments because I get to relieve some of her pain, if only for a moment or two. Being positive and supportive is giving her the strength to push more and do more and that helps us both.

We are living with this condition but we are living with it together, and that’s the only way we can live with it.

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