September 5, 2013
December 5th 2011. It was almost 9 pm when someone I’d never seen before in my life gave me the news. The news I had never thought about though I’d already thought about a lot of things. There was a part of me – a small one, the one that was having mixed feelings – that was relieved. As it turned out it wasn’t all in my head, even though for years and years they tried to make me believe it was – stress, they said, imagination, psychosomatic, I was just depressed, suffering from anxiety, I should see a therapist, I should see a shrink. As it turned out I wasn’t just being lazy whenever I saw every one around me doing a million things at the same time, filled with endless energy, and I just couldn’t.
Paradoxically, yes, it was all in my head. The MRI was pretty explicit, the lesions all too typical – most of them old lesions. Having a potentially incapacitating neurodegenerative disease, and being aware that you have a potentially incapacitating neurodegenerative disease are two very different things. Before, I would just go about my business. Now I was left paralyzed, wondering, “What do I do now?”
Not knowing the answer, I decided to trust what my neurologist told me. After all, she had seen this many times before. Out of everything she told me and that I could barely digest, I remember her saying, “You’re not going to tell anyone. You wouldn’t believe how many people have misconceptions and prejudice against these conditions.”
One year and nine months later, only very few people know. But this decision can sometimes be tricky, when it comes to work and relationships.
The first treatment I did was Avonex, an interferon that causes flu-like symptoms. For the entire ten months I took it, it was like every week I had flu. I gave myself the shot on Thursday mornings, grabbed my paracetamol tablets, and went to work. The effects would start to kick in after lunch. The only things I didn’t have were a running nose and a sore throat. Apart from that, my temperature could go up to 103º, my head seemed as if it was going to explode, the muscles in my body ached so much sometimes I didn’t think I could move, and I even had nausea. On Friday mornings I would wake up like I was terribly hungover, like a truck had run over me. I was never paralyzed due to my MS, but the side effects of this treatment made my legs so sore I once had to sit to get down a flight of stairs.
Under these circumstances, it’s hard to explain to people why I disappeared from the radar, why I haven’t gone out for dinner, why people haven’t seen me – hard to explain that I haven’t been avoiding them, though it might seem so. Fortunately I work mostly by myself in a cubicle, and that is probably the only reason why no one at my job knows about my MS. Although I did hear some comments about having been looking a bit down…
I made up excuse after excuse but I didn’t change my mind. At my job I know some people rejoice in other people’s misery, and I didn’t want to give them that. When it comes to close friends, however, things get a little more complicated. It’s hard to know who you can trust for understanding and empathy – hard to know who is going to be able to put themselves in our shoes, even if it is inconceivable for them that a person in their early thirties can be tired all the time.
Fatigue – sick and tired of feeling sick and tired
Apparently fatigue is the most common symptom of MS, and to some people it is also the most disabling. I’m certainly in this category. To tell you the truth, I can’t even remember when I started feeling constantly tired. For years, almost a decade, I considered that my fatigue was due to having insomnia, a demanding job, and – of course – not being as good as other people whom I saw running around with endless energy. The very few times I went to see a doctor because of some weird symptom, they couldn’t find anything and they told me I was too stressed out and anxious, even if I told them that that wasn’t the case at that particular moment in my life.
So I went on pushing myself to the limit because obviously I had to be like everyone else. Now I know that I’m not doing myself any favor by doing that and not allowing myself any rest. Even if it means I have to rest twice as much as a “normal” person does, I still try to arrange things so I can stop a little. Unfortunately, most of these “normal” people are not very sensitive to this need, even if they are aware of it. Chronic and incapacitating fatigue is often mistaken for laziness (“You could have taken your master’s by now”, “Why don’t you work as a freelancer on weekends?,” I heard many times). And an ex-boyfriend of mine thought I was just spoiled and asking for attention when I complained about being tired.
These people’s reactions tend to make MS sufferers even more isolated. And fatigue grows even worse. Because it’s not just the typical physical fatigue. And it’s not just the mental fatigue of worrying about symptoms, treatments, therapies, or where in your body you’re going to inject yourself next. It’s also emotional fatigue. You try to reach out to people, tell them about your world, but you can’t. Because they don’t see it, because they never felt it, because they make us feel we are not like them, because they’ve made up their minds that we’re exaggerating and being melodramatic and nothing you can say is going to make them think otherwise.
A broken leg would have been preferable: besides being curable, the said ex-boyfriend could easily understand why I’d rather watch a movie than go out for a walk. I’m the person that went on for a week seeing everything double because it was nothing. So when I say that I’m tired, I’m not even tired – I’m exhausted.
Saying that I’m tired should be nothing but a statement. Instead, it happens to become a justification, an apology. An apology because the others demand, in a more or less disguised manner, and we can’t give. But it’s not healthy to be in a relationship where you feel you have to apologize for not being 100% fine. Not even a healthy person is ever 100% fine. Besides, I already spend most of my time apologizing to myself for having developed/caught a disease that basically consists in my body hurting itself. I can’t have people around me that make me feel that I have to apologize for things being the way they are. I can’t have people around me that ask me, “Really? You’re already tired?”, with the same disdain and contempt in their voice as if they are asking, “Really? You have gonorrhea?” Really, I’m sorry.
So what does one do in this scenario? Goes into hiding? Pretends everything is fine even if it’s not easy to? It’s easier to forgive people who say insensitive stuff not knowing you’re ill. However, when you hear it from people who know everything that’s been going on with your illness – well, it’s a blow to your self-esteem. Like some sort of bullying: even though they know about your circumstances, they want to make sure they emphasize you’re not one of them.
On the other hand, I also don’t want people, like my parents, to treat me like a baby and call me up more times than would be necessary just to check on me. There’s a middle ground, I suppose. As there is a difference between being really tired and being disabled. Some days it almost seems I’m fine, as if there was nothing wrong and no lesions on my brain scan. This disease is not easy to understand, after a year and nine months it continues to puzzle me. But it’s ok to ask if you don’t understand some things about it, and it’s ok to believe me when I try to reach out to you. Complaining about me to your friends will only isolate me from the world and push me away from you. And pretending nothing’s wrong is not going to work either. I won’t miraculously be fine just because you’re pretending I am.
From now on
At the beginning, after the diagnosis, people talked to me about patient groups, meetings, etc, and my reaction was of denial. “What? Me? I don’t have anything to do with those people. I’m not like them. Look at me, I’m ok. If it wasn’t for being tired all the time, I wouldn’t even feel sick. People who don’t know I’m sick don’t even suspect anything,” and so on, and so on.
Nowadays it’s the other way round. Seems that I only want to talk to people who know what it’s like. Because they understand, even though I’m aware that the disease manifests itself in a very different way from one person to the other. Considering the past experiences, hiding in my little world and not going out sound like great ideas. Not knowing new people sounds like a great idea too. After all, how do I explain that I can’t go for a drink after the movies because, as it wasn’t previously arranged, I didn’t bring my medication with me? How do I explain the wannabe boyfriend that things in bed might not be so exciting after all because I just get so tired? How do I explain the wannabe husband the simplest things without having him run away imagining himself pushing a wheelchair, even if I may never need one?
Obviously I end up coming to my senses and realizing I don’t want to spend the rest of my life isolated and alone. So I force myself to go out on those occasions I don’t feel like a train wreck. But I still hide. And I still feel that I’m not being myself, that I’m making up excuses, apologizing, pretending everything’s ok. Maybe in ten years all these questions will be behind my back and I will laugh about it, but right now those are very sensitive topics. My self-esteem was seriously shaken. I’m the person that was told at the age of 6 that my IQ was higher than average, and now I have to accept the fact that at my dance classes I’m the only one that can’t learn a simple sequence on the first try. I’m the person that cooks quite well but has so little control in her hands that ends up cutting and burning herself all the time…
Sometimes it seems that it’s still December 5th 2011, late at night, and that I’m sitting at my kitchen table with my mother asking her who is going to want me now…