Bravery is different things to different people.
To me, bravery has come to be showing people the reality of my illness. Face to face. Not from behind a screen. Almost 8 years in and I am still learning how to do this.
For the most part when I am ‘properly ill’ I am simply too unwell to have any visitors. The stimulus of having the company of another human being is far too much on my worst days. Very few people can grasp that fact. But when you’re off work with a hangover or full blown flu, how many visitors do you want coming to sit at the end of your bed? How often do you want to drag yourself out of bed and onto the sofa to sit and listen and chat?
I have sometimes felt under pressure to let people come and see me when I simply do not feel well enough to do so.
It’s also worth noting that having visitors may be an easier option but that it is not without its own challenges. I will never be good at asking people to leave when I need to rest. I just won’t. People say “just tell me when you need me to leave” but I feel so ill all of the time that I’m not even sure I would know when that time has come until it’s too late and I’ve crashed out of the floor. People can outstay their welcome (sorry but it’s true!) and it’s not as if I can make excuses about having other plans or needing to nip out somewhere to get them to leave.
But I am trying to let people in a little more. On the poorly days when I cannot shower or brush my hair or stay out of bed all day BUT I CAN get out of bed and sit on the sofa in the company of someone close to me for 15 minutes to an hour, I am trying to do that. I am trying to let the people who want to support me, support me.
Few people can understand how hard it is to let people see the unwashed, slurred speech, sluglike shuffle version of yourself. People often say they don’t mind that version of you at all but then when they actually see it, they find it upsetting or uncomfortable and are at a loss as to how on earth to support an M.E. sufferer who cannot listen to music or watch television or read or laugh and joke. And even if THEY don’t mind, I do.
There are people though, who are willing to accept that truest version of myself. And so I am endeavouring to start making M.E. proof back up plans for the days I have meet ups with friends booked in. For example, if we have a lunch date booked in, I will now suggest that if I’m too unwell to leave the house afterall, that we have a sofa picnic instead.
It isn’t much and it will sound so much like common sense to the masses, but it is not easy this chronic illness lark. It has taken guts to get to this point even though I’ve been a full time poorly person for so long.
It all comes from the feeling of putting people out; of being a burden now. I have always worried that this new me will be far too boring for the majority of my friends; that they don’t want to have to sit quietly with me when they could be out at lunch in a restaurant. When you lose your health you lose so much more with it. My self image has become quite skewed. And that’s completely okay and understandable. But I am trying to rebuild my self-esteem. And feeling worthy of Anna-friendly activities like staying in rather than going out is a part of that.