Angela

Angela has shared her story with us: The first meal of my honeymoon, when I was 24, gave me dysentery. This triggered the genetic flaw that can lead to Ankylosing Spondylitis, an inflammatory arthritis which affects my joints, eyes, and bowel. But it was 20 years before I had this diagnosis. In that time, I was misdiagnosed which meant I received many unsuitable medications. When I did not respond to treatment I was labelled as a ‘non-compliant’ patient and sent for psychiatric treatment. The correct diagnosis, when I was 33, unlocked the appropriate treatment. However, I turned out to be allergic to all medication and pain relief. Not till late 2022 (20 years later) was I given medication which relieved what was, during that very severe flare-up, total body pain. I am still trying to find the right level of medication.

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.