The Lyme Museum
Are You There?
A mild disease, a form of discomfort, something recurrent or permanent which bothers you. What is a disability? What is chronic disease? And how are we to understand them? Is it enough to feel a form of discomfort over a given period of time to consider oneself to be disabled? There are forms of disabilities which hide themselves behind a veil of normalcy: a normalcy of the appearance of the individual who has it, or a second kind of normalcy which comes with the social prevalence of the given condition.
If a condition comes with time, it becomes more difficult to learn for the person who’s the bearer of that condition to name it, to accept it as a part of his or her body. Her new body. “Is it time or is it something that I have done?” one might ask herself. Arthritis is one such disease for me. I’ve been lucky enough to understand that there was something different before it had progressed. And now that I am better informed, I am more able and more ready to counter it from developing further in my body. My new one, which reminds me of itself if I don’t pay attention to it. With a language of its own, it gives clear guidance.
Whether a condition is medically diagnosed or not, a patient is on her own to work on the relationship with the disease. At least I am, most of the time. A functioning healthcare system is the determinant factor behind the veracity of the solitude one would be facing. “Is it gluten, or dairy”, I used to ask myself at the beginning. Focusing on the sanctioned foods as items of absolute avoidance turned my dietary universe into one which joy is restricted. At least sometimes. No health condition 9or difference) should be an obstacle before a fair process of employment- that’s one of the worries.
“If you have an excuse, you should get up and move to the back row and only stay there” said a yoga instructor once. She was angry because I was not abiding by the visible sense of group behaviour which required two dozen people to do the same thing at the same time. She liked all the yoga poses done perfectly and claiming to have a health reason stopping me from doing everything she had shown sent her into a broadly accepted rage. How many more things are there in social life where the group behaviour reigns over the truth of an individual, separating her from the rest? With the contemporary problems around the pandemics, the questions of individuality and health are more pressing than ever.
Recognising the process of the disease is difficult, as it is difficult to understand what Auto-Immune Deficiency is. Am I within a group of people who all suffer silently from arthritis? Or has everybody else found a secret medication with no side effects and I am the only person not knocking myself down? I will try to face this challenge, and by this I mean the road which remains, without medication. I have both benefited and suffered due to medication. Perhaps now is the time to be a strong woman and try alternative methods: exercising, gentle yoga (without the supervision of that woman whom I’ve never met again, of course), and some herbal teas.
I have started trying out a few things to help myself: helping oneself is much better than relying on help, or thinking that you need it more than you truly need it. Giving up (especially pasteurised) milk has been one of the toughest aspects of living with arthritis for me. I have tried to find out about the relevant tests helping an individual to find out which foods are more dangerous for her, but after all the notion of ‘danger’ within the realm of something which my body needs at least three times per day has rendered this quest rather difficult for me.
And then the question marks… The question marks about the right diet for arthritis, question marks about anxiety. And anxiety itself which is there on its own, and another one which sometimes both unites and separates from arthritis. It comes and goes, like the pain in my joints and the doubt in my mind, asking for a name, for new words to surround them. Because it is with words, and with an expression of one’s own feelings that we can respond to health problems. Mental health is health, as are the unseen ailments of the human body. They shiver and turn around in a large barrel carrying the self, asking for a song to be sang in their name.
Writing by Melis, shared with her permission.