Do not forget, though, to be kind to yourself, and to find those who will listen to you, who will open their hearts to you, and who will celebrate the achievements you make, even if they be the sort of thing others might take for granted, like making it to the kitchen to make a cup of tea, or to spend an hour at your desk, or to sit downstairs for a few hours. When you are sick, the smallest of things can become a victory. Do not belittle these things because others take them for granted,
One can also take pleasure in the activities of others. Before I got sick, I used to love walking and would happily walk sixteen miles just for the pleasure of it. For some years I had not only been unable to do this but my condition had worsened to the point that I was spending most of my time in bed. I was fortunate to meet online a friend who would tell me about her day, about the hike she had just been on, sharing with me photos and videos that she took just for me. It was a source of joy to share in her happiness, and a privilege that she “took me along” with her.
Whatever our efforts, in whatever way we ask for understanding, or accept imperfection, or try to open our hearts to others, we may find ourselves with relationships that are unhealthy for our psychological and physical health. Attending to your own behaviour is of little use if the other person cannot do the same. These may be long-standing relationships, or ones we have recently made, or are making. We might also feel that we cannot afford to be too choosy given our circumstances, that we should be grateful just to have friends, whatever the quality of the relationship.
In this context, the unhealthy other is not you but is the person with whom you are in a relationship.
Giving thought to your boundaries, what you can accept and what is damaging, is one of the most important things you can do for yourself, even if you have never done such a thing before. In fact, whatever your circumstances, if you have not thought about this before you need to start.
This is one of the biggest lessons that I have learned, not only in relation to my disease but in every way. It came to my notice with greater emphasis due to my illness as the stakes were higher, but I can see its importance in every relationship I have ever had, and will be aware of it in those yet to come, where the pattern of the relationship will be established early on.
Know what your needs are, what you are comfortable with, and let the people in your life know what your boundaries are. You do not need to ask for understanding, simply respect.
You do not need everyone in your life to follow a template of ideal behaviour. It can be workable just to agree not to discuss certain things that cause stress or disagreement. Respect can be enough if you have understanding from other quarters.
Particularly toxic, though, are those who want to convert rather than listen, wanting to overlay your reality with what makes sense to them, even if they have no knowledge of your condition or how you cope. You cannot allow others to make you feel guilty for making your own decisions about your health or what you need to do to help you face the future. This is plainly toxic behaviour that can be directly harmful to you. I suggest — only you will know best — that you tell them to stop imposing on you or, if they cannot, end the relationship.
A concern can be that the response to setting out your needs and boundaries might be seen as confrontational by the other and might lead to an argument. Fearing someone’s response is to accept the worst without having tried for the best. All you can do — in humility and in awareness of your own imperfection — is speak from the heart to begin a conversation. You have a right to express your needs in a relationship and not feel guilty for having done so. You are allowed to have expectations.