Although my symptoms started 42 years ago, from May 2021 to September 2022 was my worst period of severe inflammation and near-paralysis. In terms of emotional reaction to my illness, I separate it into the onset and chronic stages. When recovery seems possible, it’s not too hard to hope. When one realises that this is a lifelong situation, then darker feelings are faced. I felt guilty: had I brought this on myself, consciously or unconsciously? I felt shame: I was hampering my husband and family. I felt the loss of agency and freedom: the illness seemed to dictate what I could do. I felt loneliness: people did not always make allowances, especially as my symptoms were invisible.
To counteract feelings of self-blame, guilt, and frustration, I try to live in the present moment, letting go of resentment of the past and worry about the future. This helps me to accept my limitations and be creative with my time. I try to ’do my part’ to be well and to be proactive in helping those who want to help me. I aim to implement the advice I’m given. At the same time, I challenge treatment which seems wide of the mark. I would like a balanced type of medical approach; I try to do my side for that.