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To My Future Partner: What You Need to Know About My Life With ME/CFS


To my future partner,

You don’t know me yet, but when we meet my illness is unlikely to be apparent 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 myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I want you to see me in the positive light that I see myself and I fear that you will pity me or even judge me as somehow being “less whole” and less worthy of your attention. But I will have to tell you, because although I have created a dream life for myself and am extremely skilled at looking after myself, this requires 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 or 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 now do. I know I can’t afford to push my boundaries or 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 to carefully plan my day and manage my energy.

I’ve been looking after myself extremely well for years. I don’t need a caretaker, but I do need a partner who cares enough to consider my needs. 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 recognize my amazing achievements: I’ve overcome the challenges that I have faced. I’ve learned to make a great life for myself despite chronic illness. I’ve learned how to be happy and how to spread that happiness to others. From time to time I will suffer. When I do, I may need a little empathic understanding, but I won’t want you to suffer on my behalf. I will want you to have confidence that I can get through this, and to trust as I do that I will soon come out on the other side. 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 minimize, manage and tolerate my suffering.

Although I am a warrior and I want you to respect that, more than anything I want you to see the “me” that has nothing to do with the illness. I guess I am most like myself when I spend time with friends and family who have known me since I was well, but you will not have enjoyed that privilege and I fear that 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 my illness become a blindfold. Please choose to see the whole and beautiful person that is me.

In loving anticipation,

Julie

Follow this journey of living with chronic illness at ME/CFS Self-Help Guru.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.