I am not sure quite what to say to you, as I have never written a letter like this before but I will try my best.
I find you very odd; I experience so many fluctuations in my health and how I feel, and the severity in which I experience the symptoms that you cause me. These fluctuations not only change day by day, but can also change hour from hour, or even minute by minute!! And it’s these fluctuations that stops me from leading a normal life. This condition does not allow me the ability to make plans for nights out with friends, or holidays or full days out, as I never know how I will feel on that particular day, or even I am having a rare ‘good’ day, I have no knowledge whether it will remain that way, or if I will be taken ill sometime during the trip.
Living with you day-to-day is hard, and it’s particularly hard when questions are raised by others about you. You are rare, and not understood, even doctors can be baffled by you. This then causes the mammoth task of trying to explain you – what you are, how you affect me and so on. I would wish no chronic illness on anyone, but one which is especially difficult as you are is particularly hard to deal with. The loneliness and isolation that you cause, can often be overwhelming; no one can understand exactly how I feel, or what it is exactly like living with you. There are no support groups for people like me, living with you, no friends who I can call on when times are tough and I really need to vent; I have several confidantes – some online, some I can see in real life, but still no one that can just get ‘you’ and how you treat me; how you affect me.
I have lived with you for so many years now; many of those years I did not even know of your existence. Now, you are constantly making your presence felt, like a loud, harsh scream being blasted in my ear. Every turn I make, you are their, like a shadow; a dark figure lurking, waiting. And then within a blink of an eye, my legs will give out; lying on the ground, unable to get up due to the weakness in the legs. You causing embarrassment; you causing injuries and pain. The doctors tell me that there’s nothing that can be done – no treatments to help, no reigns that I can attach to keep you under control. When I was diagnosed with you, at first there was relief – relief at knowing that there was a name for you; relief that finally I had validation from the doctors’ that you were very much real, and not in my head as it was often claimed. Then, I have felt despair; despair at realising that there was nothing anyone could do to treat eliminate you from life. It was like being blindfolded and then left in the middle in the centre of a garden maze where I am expected to find the exit without any guidance and without the ability to see exactly where I was going.
You have made me your victim, from something that I cannot escape. Never will I escape you; you live deep within me, deep within my brain, there will you be there forever. But I will not let you win, I will not let you beat me, and I will be happy despite you, that I am determined of. Because of you, I have found inner strength, have found things that I am good at, and have found ways in which I can help others and participate in social activities and pastimes. Despite you, I have found friends whom I can talk to and despite the problems you cause, they like me for who I am, and look beyond my imperfections.
I may not be able to beat you, but because of you, I am stronger than I have realised; have made me aware that I can overcome certain obstacles and overcome challenges that come within my path.
And for that I thank you.