I don't find it easy talking to friends and others about my CFS. It's an illness which many people don't understand very well, and which is hard to grasp even when you're seeing it up close and personal (or even going through it). I'm still so conflicted about the diagnosis that it's been difficult for me to express to others. It's up to me to deal with how it dictates my work (or lack thereof), my routines and my health. But I can't seem to come to grips with helping anyone else to, more or less, cope with me.
When explaining to a friend (who also suffers from Chronic Fatigue Syndrome) my feelings of helplessness at maintaining most of my friendships, she forwarded this letter which someone had sent her when she was first diagnosed. It's the most accurate, clear picture of how I feel about where I am right now:
To a friend,
Yes, I have CFS. I am still the same person inside, your friend. I am just limited in what I can do. CFS is a real disease; many others have it. It is as real to my body as the paralysis which traps some people in a wheelchair. Like that person I want to live my life in as full a way as I can, and I am trying to do this as best I can. I know you want to help me and I appreciate this. What would help most of all is to have our friendship adapt to something that we can both enjoy, rather than losing you because I can't interact with you the same way I have in the past.
Please trust me to know what my body feels and to know what is good for me. Understand that when I say I am not sure if I'll be there it means I can't tell what I'll feel like that day, NOT that I don't want to be there. An invitation issued with your sympathy towards the fact I may not be able to make an event would make it so much easier for me not to feel guilty if I have to say no, or eventually miss our plans together. I understand that often when you see me I may seem as if I am doing quite well. The chance to see you is an important highlight for me, and usually I will have dedicated a great deal of time and energy to make sure I can enjoy it as much as possible. When I excuse myself and say it is time to go home; it means I am really tired and I need to rest. Please don't try and stop me or baby me - it makes my going that much harder.
CFS may be with me for a while so, although I appreciate your concern, please don't ask if I'm "better" every time we meet. Believe me, I'll shout it out from the rooftops when I feel better! Sometimes it would be nice to do things at my energy level. A short lunch somewhere special, a coffee in my lounge room, an early movie or a chat on the phone. I know we all have so much going on, and too many things to manage, which only makes me appreciate it so much more when you make space or time for an activity I can manage near to my own home. Even the occassional phonecall or email which reminds me I haven't disappeared is priceless. Thank you for not giving up when I don't answer the phone immediately, or return an email on the spot. I appreciate your efforts to keep our friendship on track and stay in contact, even when I'm not able to be proactive in the same way at this point in our relationship.
If I'm doing something alternative to try and get well, please support me; don't undermine my confidence. I enjoy and appreciate your friendship very much and just knowing you are there helps me cope with this hurdle that is CFS.
I wonder if that goes any way to helping people understand? It was so clear to me, but I wonder if that picture is so clear in the translation?