What is it like to live with someone with CFS? Frustrating, heart-breaking, irritating and draining (physically, psychologically and financially). But, after all, CFS is a serious, long-term debilitating illness with no obvious cure and so should anyone expect it to be any different?
You have to learn to adapt in a lot of ways - the things you used to share together may no longer be possible, including such simple things as doing the shopping together or going on days out on a mere whim. You learn to understand that there are a lot of things that you now have to do on your own, like the shopping, or dealing with financial matters - indeed, you will most often now be the “sole breadwinner” if you weren’t before, so you also have to adapt to what is and is not affordable.
You have to put your own needs, if not completely to one side, then tucked a little bit out f the way, so that you can focus your attention and energies on your partner who will have considerable needs, emotionally to deal with what’s happening to them, and also basic home care so that they can just get through the day. This may make you feel frustrated and angry as you find yourself struggling to meet their needs as well as looking after the home and yourself. You may want things to be as they used to be, so that you can continue to share in the activities that were so easy in the past (like holidays abroad) but which are now either very difficult or impossible (long-distance travel may be too traumatic and exhausting for your partner).
You can get angry with the illness as you watch your partner change from the person they used to be with all that they used to do into someone who is now burdened with a debilitating disease, but you also learn that it’s not wise to show any frustration or anger. Your partner will already be feeling awful about the demands they must make and the things they can no longer do, and they of course are not at fault, they are not to blame, for being so ill, so the last thing they need is to be made to feel guilty about how you are feeling.
But living with someone with CFS is also an opportunity. It is a chance to rise to the challenge of offering real love, care and support. It is easy to do the right thing when everything is fine and easy, but it is when times are hard, difficult, daunting, that one must step up and measure up to the demands of love. By offering unconditional love, support, care and consideration, thoughtfully and generously expressed to a partner stricken with that dreadful illness that one can make the best possible difference.
Author Resource:
Sian Hughes is a pen name for Debbie Deboo the creator of GlamSticks, fun and funky customised walking sticks and crutches. She also suffers from CFS. www.glamsticks.co.uk
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