We all have experienced, at least once in our lives, that moment when we wished we could go back. But we know we can’t – it’s impossible – so we grow out of that feeling, reason we weren’t as wise back then, search for the details that tell us things weren’t even that good, all in order to quiet that longing. We say, “My life is actually better now, you know, despite.” But with chronic illness? I’m not sure the process goes like this. Continue reading
I haven’t told my father and stepmother about my relapse and the upcoming change in medication. I know I will eventually have to sit down with them and tell them the news, but right now I don’t think I can handle their fears. My father would start calling me every day wanting to know how I am and I would pick up his anxiety and start feeling anxious too. I know, this has happened before. Besides, the fact that I’m still not well would start making me feel guilty, because everyone wants so bad that my vision is crystal clear and it’s like it’s my fault that it’s not.
So instead I’m feeling guilty for lying to them. Every time he calls and asks how I’m doing and if I need anything, I lie. I hate doing it. I never was one to lie because I always thought lying was too much trouble and a waste of mental space and energy. When you lie you have to remember the details of what you said so as to not be caught. Sometimes your lies get all tangled up. And being that my memory is not what it used to be, I always felt it was so much easier to tell the truth.
And then I was diagnosed with multiple sclerosis and lying became almost second nature. I don’t trust people enough to understand, so I lie. I don’t trust people enough to be empathetic, so I lie. I don’t trust people enough to be educated, so I lie. I don’t trust people enough to support me, so I lie.
I told one of my closest friends this time that I had the flu. The ones I told the truth I wish I hadn’t. One of them said to me – and I don’t know if he was being supportive and optimistic in his own way or just plain dismissive and ignorant – that if I was going to change medication that meant I was going to be fine. (I wish I will be but there’s no guarantee. Hell, there’s not even guarantee that I’m eligible to take those meds and that I won’t have major side effects and have to stop taking them altogether.) Another friend of mine was more worried that I wasn’t available to go out with him on a Saturday night. He didn’t ask me how I was doing, if I was better or anything. He just asked if I was going to stay home. (“Errr, I lost part of my vision, have been spending the last days in the hospital for infusions, I’m mentally and emotionally drained and suffering from the side effects of the steroids, I’m sorry if I’m really not in the mood to go out and soothe your loneliness.”) That was two weeks ago and I haven’t heard from him since. I don’t want people to call me every day like my father would do if he knew, but a text or a Facebook message once would have been nice.
So it’s been almost three years since I got my diagnosis, and the social aspects of living with this disease are still the hardest for me to deal with. I can deal with daily injections, MRIs, bad news, disease progression, everyday symptoms and things most people wouldn’t even dream of, but I just can’t deal with the way other people cope, worry or just don’t care. It was a major issue with my ex-boyfriend and it’s a major issue with those around me who know. On the one hand there are those people who want me so bad to be fine that end up suffocating me. My mother was already searching for MS specialists in other countries, as if they were going to make any difference, before I told her to stop not only because I trust my neurologist but also because I’m too tired to meet her expectations. On the other hand, there are those people who don’t seem to care, or if they do they have a hard time showing it. Very few people are somewhere in the middle.
That means that, for now, as much as I hate it, as much as it saddens me, I think I’m gonna keep lying. Because it protects me. And because I’m one who needs to be protected.