For me, recieving a Lupus diagnosis came with a very profound change in my lifestyle. At the beginning I felt a great frustration for being unable to do what I wanted to do, of having to let go of activties and dreams that were now unrealizable. For example, when I was a child, my hero was Indiana Jones. I wanted to travel throughout the most esoteric places finding and experiencing magical objects and unforgettable adventures. Obviously I did not grow up to be Indiana Jones, but the taste for adventure never left me. I would love to travel the world, knowing places, doing intrepid stuff, being an adeventurer. The diagnosis killed this dream, along with so many others. Now I could not be in the sun, do extenuating phisical activities, be far from medical help or be exposed to dangerous pathogens in the air. I had to reorganize my whole mental structure, my dreams, my self image. This took many years of frustration and depression. It was a sense of beravement, for practically the person that I thought I was had died and I had to reorganize my whole personality with my present limtations, giving birth to a new me. I managed to make a new identity, to find activities that I could do within my physical limitations. This way, from being an intrepid explorer, I became a writer, where I can live the adventures in my imagination if not in the real world. I travel, but not to exotic places where I can’t receive medical help if I need it. I do go outside, but completely covered or in the shade. I take care of catching disease, and I always go where I can find medical help in case of emergency.
Like me, all the people who have received a diagnosis for a chronic illness have had to modify their lifestyle in some way. Some comments I have received about these changes are:
-I had to stop working, the constant fatigue made it impossible.
-I had to move from my house. I lived in the country and started to develop allergic reactions to the chemicals used in the fields, along with the polens and molds common in the area.
-I had to stop gardening, which I loved, because the sun is really harmful to me.
-I had to stop high impact excercise, the pain in my joints was unbearable. I dreamed of being a marathon runner.
-I can’t be in places where the weather is cold, for the heating makes my skin itch and break out.
-I have insomnia. I sleep at most 3 hours a night. I am exhausted all day and can barely do anything. My family has had to take over my house chores which I performed with love and dedication. I feel useless.
-I have oseopenia after years of prednisone and plaquenil. My bones fracture easily and the pain is atrocious. I have to be very careful of my movements.
-I had to radically change my diet. I became a vegetarian for the toxins in red meat made me flare. I live in a town whose main production is meat. I’m the wierd one around here.
Like these there are many more examples. It is inevitable that an illness produces lifestyle changes, some light, some more dramatic. Any way, with every limit there is a loss, and every loss has to be taken into consideration and elaborated, going through the bereavement implied in losing ourselves as the person we were to recuperate the person we now are.