To the person interested in becoming my partner: what you need to know about my life with ME/CFS

A bit of a personal post today. This topic was suggested by The Mighty and I will certainly be submitting it to them. It really resonated with me and I’ve enjoyed discovering what I would want to say!

To my future partner,

You don’t know me yet, but when we meet the fact that I have a chronic illness is unlikely to be obvious to you at first. You’ll meet a happy, relaxed person who loves to connect with other people. There might be little clues if you know how to look for them. You might find it strange that I don’t spend long in social situations. If we were to meet at a party I’ll almost certainly be the first to leave.

It will be difficult for me to tell you about the fact that I have a ME/CFS, I will want you to see me in the positive light that I see myself and I will fear that you will pity me or even judge me as somehow less worthy of your attention for somehow being less whole. But I will have to tell you, because although I am extremely skilled at looking after myself and have created a dream life for myself, it takes a lot of daily care and attention. Without respecting the limits to my energy; without my rests, pacing and quiet times; without my yoga, tai chi and meditation; without my careful attention to what I eat, I would not be able to do all that I now do, I would not be able to feel as good as I do. I know I can’t afford to allow my boundaries to be stretched or to be as spontaneous as I would love to be. And if you’re going to spend any length of time with me, I’m going to need you to accept and consider my need for carefully planning my day and managing my energy.

I’ve been looking after myself extremely well for years. I don’t need a carer (care giver), but I do need a partner who cares enough to consider. Getting the best out of my life takes a lot of time and work and if you want to share that life you’ll have to be prepared for me to spend a lot of time doing that work. But I also have a great deal of love to give, and I can’t wait for the opportunity to spend my disposable time and energy loving you!

I want you to see my amazing achievements of overcoming the challenges that I have faced; of learning to make a great life despite chronic illness; of learning to be happy and spread that happiness around. From time to time I will suffer. When I do, I may need a little empathic understanding, but I won’t want you suffer on my behalf. I will want you to have confidence that I can get through this, to trust as I do, that I will come out the other side soon. This is important, I want someone to care about me, but many people make the mistake of believing my suffering is awful or intolerable and don’t respect the skills and abilities I have developed to help minimise, manage and tolerate my suffering.

Although I am a warrior and I want you to respect that, most of all I want you to see the ‘me’ that has nothing to do with the illness. I guess I am most myself when I spend time with friends and family who have known me when I was well, you will not have enjoyed that privilege and I guess I fear that it will make it harder for you to see me. I’d love to not have to tell you for a while; I’d love to somehow be able to get to know you without the shadow of this illness hanging over us. But I also believe in honesty and I will need to set my boundaries. So when I tell you, please don’t let the illness become a blindfold. Please choose to see the whole and beautiful person that is me.

In loving anticipation,

Julie

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1 thought on “To the person interested in becoming my partner: what you need to know about my life with ME/CFS”

  1. Your best blog yet.

    I am married so not looking for a partner, (if I wasn’t it would be something far from my mind at the moment!) but so much relevance for anyone we meet who we wish to connect with.

    What resonates most is the worry that those who have not known us well, will have more judgement somehow. That look of either judgement and disbelief or pity. I too am most comfortable with old friends who knew the active, confident, busy me, even though there are now things I would change about that!

    But just maybe accepting and working with your needs is easier for someone new in your life than for someone who is not used to you having that self compassion?
    Maybe also easier for us to expect them to handle that as they know what they are getting themselves into?

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