This is a huge issue, discussing your pain each day, or not discussing it. If you tell your relations that today is not a good day, isn’t it helping them, or just assisting you? Does it help both of you? If you do not mention your pain level at all, but instead put on a smile and act as if it all ok, is that better? For who? This is a very fine and incredibly difficult decision. I have always been on the side of telling my family, friends, and any other important persons in my life that I am hurting more than usual. Others, either find a way not do not do this, or make this a conscious choice.
The first two years of my fibromyalgia pain, I informed people of how I felt and what I was able to do, or not do. I believed then, and believe now, that it is better for them to know how I feel rather than pretending. If I pretend, I may fail at their expectations. I will be holding two bags; one, my pain, two, my fake smile of “everythings great”. This approach has had negative effects on those around me at times.
When it was, or is, a bad pain day, I felt that if those around me knew that then there would be a mutual understanding and not an upset later at what I said I would or could, but actually could not do. A problem with my approach has been brought to my attention lately, not in a very nice way either. My last two years, after doing better in keeping pain levels at a steady rate, the intensity has returned (grown really) in my pain threshold and how many times a week it occurs. Stating it is a bad day, has gotten repetitive. My family and friends are not having it. They don’t want to hear it.
I hear them but I do not have a coherent response. If I stop informing them of my pain, how will they know if I need help around the house, help walking the dog, or am just going to lay in bed or on the couch all day? Is there a code word or look I could insert instead? Should I plaster a smile on my face and the dog doesn’t go out? I am lost and confused.
Putting on a grin and acting like all is fine doesn’t work. I need assistance on those days. Unfortunately, these days have become like the first two years of my diagnosis. I am not ok. If my friend expected me to show up and I did not, but also did not inform them in advance, isn’t that worse? If my family is about to leave for work and don’t know I need help, then what do I do?
No one wants to ask for assistance. No one wants to tell their anyone, that they hurt. No one wants to have this syndrome. On my good and bad days I thank and praise their very existence! I count my gift days. The fact remains that I am who I am. I can change certain things, but not my medical issues or the depression on those days. No, not depression, but depressed days when my pain rules my day. If I held the polar opposites of pretending but not hurting, then isn’t that making me worse from the physical and psychological tension?
I wish I had the answer to this dilemma. I know I need to find one pronto. I love my supporters. I need them. I don’t want to upset them, I want to have fascinating times with them. Sigh. I know there is a balance for them, is there one for me?