People will surprise you. And as with all surprises, some will be pleasant and some... well.... not so much.
Society is not geared up for the kind of chronic illness that lasts indefinitely and has no certain path of recovery. People are more familiar with a different pattern- someone gets ill, then that same someone either recovers, quickly or slowly but with a definite upward trend, or is told they have a terminal illness. This kind of certainty is impossible with M.E. It might get better, it might get worse or it might fluctuate wildly within the month, the week or even the day. And it will probably drag on for years. This can be difficult for others to understand and cope with.
When you are first ill people come to visit, send cards, offer to do shopping, make a special effort with social arrangements (such as arranging to visit you instead of meeting in town for a cuppa) and generally offer support. But you carry on needing this kind of support long after most people would have recovered.
The hardest thing of all is to ask for this support, or accept it when it is offered. I am lucky enough to have had more good surprises than bad. I have a loving and understanding family, a solid network of friends and a periphery of more distant, but hugely important people cheering me on. Friends of my parents, members of my orchestra, fellow crafters. A wonderful neighbour I can rely on to help me out or just share a cuppa and a laugh with. A network of online friends whom I can discuss the highs and lows of this illness with. I have been touched by the amount of caring people cheering me on.
But still the thought of those who have let me down niggles at the back of my mind. I try to excuse them- they don't understand and my expectations of people have always been too high. In the end perhaps we were not friends in the first place as I had thought, but just acquaintances. I am glad to have found that out. And anyway, I try to dwell on the good surprises, the people who have been there helping me through, because they're the ones that matter.
I may not be able to pay back your help just now, but I will never forget it. I can't go out partying like I used to, but you bringing the party (albeit a quiet, M.E friendly one) to me means so much. A cuppa, a chat, a laugh, a card through the door, even a text means the world to me. It shows me I am not gone from this world.
Friendships must change, but they can still be rewarding and fulfilling on both sides. Thank you for making the change.
And for those that have let me down- well, it's never too late.