The other day I was preparing for my eye exam and looking forward to getting some new glasses and better vision, and as I waited for my appointment the sales assistant bought me a form to fill out, and there on this form were the two little ubiquitous words that I dread so much these days.
Oh how I hate that question!
I remember a time when it barely even raised an eyebrow and I simply left it blank, but now that feels like such a long time ago now. A life time ago now. Now these words are a sad reminder of these constant struggles.
As I finished waiting for the optometrist I started to contemplate the following ideas…
Whenever I would prepare to go grocery shopping I would always find myself writing a shopping list. I used to enjoy grocery shopping, but most of all I enjoyed writing lists; I guess it is par of the course when you are a Type A personality. However well prepared you may try to be the fact remains that when you do finally reach the grocery store you will often find ancillary items that will be added to your list and when you get home there will often be times you will have forgotten of will need to get at a later time.
My shopping list of illnesses has become sadly similar.
The list has been steadily growing over the years. There are some illnesses I have yet to have diagnosed, and then there are the ones that may be waiting their turn to make a surprise appearance.
Nowadays I must ask for another piece of paper to complete my list and to complete the list of Medications that appears further on down the form.
I find it perversely humorous that I am now at a point where I have been prescribed medications that even doctors have not heard of, for conditions that they were previously not aware of. EPI is a good example of this.
I remember the days when even I hadn’t heard of these illnesses and diseases. I lived in joyful ignorance of them all, despite the fact that they may have been percolating inside me for decades. Ignorance can truly be bliss.
Nowadays I carry the list with me everywhere I go.
I remember conversations with my elderly relatives where I would listen as they would say how their arthritis and lumbago were acting up whilst swallowing blood pressure tablets and cholesterol medications. I thought to myself how I would hate to reach that point in my life. These are somber recollections to me now.
However much you may dread returning home with your bags of shopping, you must still unpack them all and turn them into meals or use them in your everyday life. They are yours and you must use them in the best way you can.
No matter how long my list grows I must still make the best life I can and do my best with what I have. It is for this reason that a have rarely referred to the list to my friends and family and don’t make a habit of listing them all. I simply called myself Autoimmunitygirl and left it there. One word to encompass many experiences and struggles.
Listing all the autoimmune diseases and ancillary illnesses that I have collected would only serve to dampen my spirits and make me feel the emotional weight that these labels can carry. So I try not. Often I will hand the form to my husband who will take on the task of completing it and I am eternally grateful that he does.
I know that not referring to the list and explaining each illness will cause a gap in how many people may be able to understand what I may have to contend with and the extent to which I must struggle each day but I believe in my heart that no one can ever truly understand unless it was happening to them.
Underneath the shopping list of illnesses and diseases remains a person who is determined to have the best life I can in spite of the physical limits that are being placed on me.