There is one thing I don’t think I have really talked about that is something I think anyone with a chronic illness will be able to relate to. It the strange feeling of loneliness when it comes to my illness. I don’t mean I am lacking love and support, this is a different loneliness one that at times separates me from all those around me.
No matter how many experts I listen to, articles I read and support groups I had joined, no one has my illness as I have it. Medically true when it comes to all the array or autoimmune disease but it isn’t the medical definition that causes this, it is my own personal experience, both physically and emotionally. It very soon becomes clear once I was ill that I was alone, no doctor, carer, family or friend have the slightest understanding of what is actually happening to me. I can write here every detail and every feeling, but none of you will understand totally, because well, you are not me. It helps beyond any word I can think of having those that care, who listen, who try to understand, but when it comes to the silent hours, when pain is driving me mad and every silly symptom decides to make an appearance, I am ultimately alone, even if someone is holding onto me, there is a gulf of loneliness.
At this point I can hear the word depression circling in your minds. It’s not! Imagine that you have just fallen down some stairs, you are at the bottom of them and your family and friends are all there. At that moment not one of them, inducing yourself have the slightest idea what is happening to you. It becomes clear that you have broken your leg and banged your head, the broken leg might be clear to see but unless one of them had broken their leg in the past in exactly the same place, not one of them has the slightest understanding of the pain you are in. Even the one who has had a broken leg, actually won’t know the pain you are in, humans forget pain as time passes and we all have our own pain threshold. The Doctors will fix it and fill you full of painkillers but they don’t even know how this is effecting you. That leg has thrown you into a place where you are on your own. That bang on your head the one you are telling everyone is nothing, might be in the process of doing more damage than even you think it can. As the drugs dull the pain you want to sleep but no one will let you, everyone is telling you what to do and you just want to sleep. At that point you don’t understand and neither does anyone else, no one can see what is happening inside your skull, it is invisible, even to yourself. All you know is you feel bad and might by now getting confused by it all, are you getting the picture?
That loneliness is part fear, part a feeling of being locked into a position that I can’t escape from, part desperation of just wanting it all to stop, part the fact that no one can possibly really understand and if they can’t understand, they can’t really help. Chronic illness has locked me in a world that is totally mine, totally isolated because it is mine and mine alone. Those who try to reach into that world often find they get the reaction they least expected, it isn’t that I don’t want or need the help, the love and the contact, but when things are bad I am locked in a space that means I can’t reach back. Loneliness isn’t always what you think, loneliness can come from isolation and Chronic illness isolates like nothing else.