This is so often a question asked of people with a chronic illness. And when a diagnosis is new, there may be a myriad of answers. Quite probably many, many things that would make life easier.
But once disease is established, once it is old, once it has settled into our lives and become so much a part of it that we almost forget…almost…what life used to be like, what you can do to help becomes so much simpler.
I have accepted my disease. Which is not to say that I’ve given up. I just mean that I have the day to day stuff under control. I’ve found different ways to do things, to get jobs done, to keep the essentials of life humming along. Until a megaflare comes along and knocks me flat. I know those are always around the corner. I just don’t know when, but I know they will happen. I take each day as it comes.
I have accepted that the pain is life-long. That it may wax and wane to a degree, that there may be small reprieves…but I will never be pain free. I want to talk about it even less than you do…although sometimes I do need an outlet, someone to vent to. I don’t want to spend my every waking moment thinking about it, however.
I have accepted the treatments, the side effects, the risks and the ‘what I wouldn’t do for’ benefits that these treatments promise. I deal with the side effects and have to make choices regularly as to whether these treatments are worth the risks. Those decisions are mine and mine alone, and they are lonely.
I’ve had a new drug work briefly and send me to the heights of euphoric bliss, only to damn me back down to the dark depths of misery and despair when the pain returns. I’ve had a drug that my doctor said helps everyone do absolutely nothing for me. I’ve had a drug hospitalise me and leave me close to death.
I’ve figured out ways to do the shopping with every joint afire. I’ve figured out ways to drive safely with only one arm and one leg functioning. I’ve figured out the ways to sit, lie, and curl up on the couch that cause the least pain, and still look vaguely normal. I’ve usually got the freezer stocked with ‘go to’ meals that are simple and nutritious.
I’ve figured out which supplements, if any, help me.
I’ve figured out which dietary changes, if any, help me.
I’ve seen all the doctors. The great ones and the not so great ones. I think I have almost every kind of specialist in my phone contacts list. I’ve tried acupuncture and naturopathy and magnets and loads of other alternative therapies, largely out of desperation or to please someone close to me who was convinced that if I would just try their favourite therapy, it would fix me. Except my illness wasn’t the same as their Aunt Betty’s. And no, none of it worked.
So what does that leave? What can you do to help?
Come and visit. Spend time with me. Be my friend.
Be my friend knowing that I don’t have that much to offer in return. Be my friend knowing that all that I have to offer is contained in this little space. Be my friend because you see that I am so much more than a body that’s not working properly right now.
Being in so much pain that you cannot be part of the real world is the loneliest thing in the world. I don’t want anything from you, except your company. Your time. Some conversation. No, I don’t want to talk about my pain, my disease, my problems the whole time. I will talk about it some of the time, but you probably won’t see much sign of it at all. I want to forget about it all as much as possible.
And that’s how you can help.
I want to hear about what you’ve been doing. Your job, your kids, your hobbies, your life. I want to hear your opinions, your views, your ‘stuff’. I want to feel part of that world. I used to be part of that world too. I want to forget about the problems in my life for a while. I know you have problems too, and mine aren’t any worse than yours. They are just different.
I’m in a different place now, where my body has betrayed me and medicine can’t help. I used to go out and create a life, and it was a pretty good life. But now I’m often confined to base.
So what can you do to help?
Just stop by. You don’t have to stay for long…an hour? A half hour, have a quick coffee on your way to pick up the kids. Drop in on the way to get your shopping. I’m most often stuck in this house, in this very room, on this couch. Though very comfortable, it’s like a prison to me. You see I can’t leave this damn couch right now. And I’m not sure when I will be able to. And I’m very aware that there’s a whole world out there, carrying on without me. That I can’t get up and participate in.
What can you do to help? Just visit me. Be my friend. I can’t come out and play in your world. So bring some of your world to me.
It will mean the world to me.