A Letter to the Newly Diagnosed

If you are reading this soon after being told you will be living on artificial nutrition, first of all, I am sorry. I know the fear and the flood of questions, because I have stood exactly where you are standing now. I remember the drive home. I remember not knowing what to say to anybody, and I remember the specific feeling of my future being rewritten by somebody else while I sat there and listened.

So let me tell you what I wish someone had told me. It gets easier. Not overnight, and not in a straight line, and not on the schedule you would choose. But it does. The things that feel impossible this week, the ones you are quietly convinced you will never manage, will feel ordinary in a few months. You will do them without thinking. Your confidence grows without you even noticing it happening, and one day you will catch yourself being competent at something that terrified you, and it will be a strange and rather good moment.

You will grieve for the things that change, and that is allowed. Nobody gets to tell you it is not a loss, or that you should be looking on the bright side, or that others have it worse. Take your time with it. Be angry if angry is what you are. It is a real loss and it deserves to be treated as one rather than tidied away.

But please do not write off your future while you are in the worst of it, because the view from there is not accurate. A full, rich, adventurous life is still very much possible. I am living proof of that, and I am far from the only one. The life you end up with may not be the one you had planned. It can still be a very good one, and it can still be yours.

Above all, you are not alone. There is a whole community of us out here who understand exactly what this week feels like, and we are glad you found your way to us. Take it one step at a time, and no faster than that. You have got this, even on the days you are certain you have not.