One of the many questions that I have been asked the most since diagnosis, but have been too afraid to answer is this:
“Why didn’t you tell me?”. “Why didn’t you tell us that you were exhausted, sore, cold or struggling. How did we not know these things about you?”
I don’t answer you not because I don’t know the answer, but because I don’t know how to give it without hurting your feelings or making you defensive. I don’t know how to remind you of the many many times that I did tell you that I was cold but you laughed at me, made jokes to and about me and that everyone around us joined in. I don’t know to remind you of the times that I said I was too exhausted to do something so you asked me how I could possibly be when I don’t work full time.
I don’t know how to remind you of the times that I pulled out of things and you told me that you were hurt by that. I was too afraid to tell that it became easier to not commit to things in the first place than face your disappointment.
I stopped telling you because the invalidation and humiliation around mocking, laughing and teasing when I am cold but you aren’t, or in agony over knocking myself on something small, was wearing me down. I was embarrassed when you laughed at me for walking into a door or a wall, or when I couldn’t keep up with even the children on walk so in the end it was safer to hide most of my symptoms.
I knew it was time to stop sharing my issues when your eyes started to glaze over after asking me how I am today and I actually (stupidly?) told you. So I stopped answering truthfully.
You didn’t know everything because after being honest about a few things it became unsafe for me to tell any things at all. I tried to tell you but you didn’t want to know. Don’t feel bad, it isn’t just you. The doctor wants to check out my damaged ligaments in my ankle when I fall, but he doesn’t want to know that my fingernails bleed when I peel an orange or that sometimes I am so exhausted that I can’t think straight. He doesn’t listen to the barrage of little things that crush me either and so many of my symptoms were brushed off there as well.
Don’t feel bad, I would rather you learnt from this and gave voice to others. No one wants to be a hypochondriac and nor do we want to encourage it in others, but there are so many people suffering from chronic illness around us and it would be great if we could safely be heard .