There have been more and more girls in our community lately speaking openly about their invisible illnesses. I have occasionally spoken about mine, but I am generally hesitant because I am so afraid of people interpreting it as attention seeking. To be honest, it is really terrifying. However, reading my best friend, Victoria Suzanne, write about hers publicly, has really encouraged me to do the same. I think it is important to not be ashamed of the less pleasant things in our lives that we cannot control. It is part of being human, and it needs to be talked about so that we can support one another.
When I do write about it, it is easy to state the facts, give a medical history. I have Psychogenic Non Epileptic Seizures, (also known as Non Epileptic Attack disorder,) Venous Malformations in my right leg, mild hypoglycaemia, chronic anxiety, Obsessive Compulsive Disorder, and I have battled on and off with Anorexia Nervosa over the years. (You can read a detailed overview of some of the main issues here. It’s an old blog post from when I went to the Mayo Clinic last Summer.) However, I don’t often reveal how debilitating things can get, and how it has affected me emotionally. The problems seem to couple with one another and bury me in their nonsense.
The malformations started out as being non-problematic, only occasionally bothersome. Ten years after their full emergence, I can barely do half of the things I used to. They replace the muscle in my leg which make it difficult to walk or stand for long periods of time. They swell with blood and are frequently very painful. This is why I use a cane. Because of how I have to adjust my weight distribution when standing and walking, I have slowly developed chronic back and hip pain as well. (At least, this is my theory. As you’ll read shortly, I’m beginning to doubt this.)
For the past year, I have been in constant pain when not on pain medication. (I take Tramadol for the less bad days, and Vicodin for the more excruciating days.) The Tramadol also helps with my anxiety slightly. Unfortunately, it is becoming less and less useful at this current dosage, and I am loath to increase it. It is not a narcotic, but the body does become dependent. When I do not take it, I go through withdrawal that feels like having the flu---hot flashes, chills, nausea, headache, et cetera. For the past few weeks, it has been difficult for me to get out of bed and do normal activities. I have been spending most of my time resting. Anything I elect to do for enjoyment has been cut short because I simply can’t last any longer.
My seizures are caused by anxiety, and my brain has become unable to manage the same amount of stress as a normal human brain. This causes me to be very easily overwhelmed. Pain is also a stressor, so you can imagine that I have a lot of seizures. Unlike in epilepsy, I do not lose consciousness, but I do have different types of seizures with varying severities.
All of this has taken a great toll on me. I have to constantly cancel plans to go to meet-ups/casually spend time with friends at the last minute. I have had to quit work and apply for Social Security disability benefits. I may have to put graduate school on hold again and withdraw from another class. (I am praying that I can get a refund, even if partial.) There are too many moments that I feel like a failure, that I am not pulling my weight in society, and that this is somehow all my fault. I have to constantly remind myself that I am useful and good, that I do good for others.
I think one of the two worst products of this muddled, backwards, health-equation is the lack of understanding from my peers I sometimes experience. It is difficult when others take it as a personal affront when I cannot keep plans, am not myself in person, or when they hold against me the fact that I cannot support myself yet still have luxuries. Luckily, those particulars are not usually indicative of interactions with my loved ones, and there are those who have grown to no longer feel that way.
The other most unpleasant product is the loneliness. During the days when I cannot leave the house, I have no in-person contact with other human beings. I love interacting with friends on the Internet because of this and am always attached to my iPhone, but it does not replace being next to someone. Social interaction is something for which I am often desperate. I have many friends, but lately I have felt too unwell to be enjoyable company.
Despite the hardship and strife, I absolutely refuse to lose hope and promise myself to maintain even the slightest shred of positivity at all times. Lolita fashion brings me immense joy. I can resolve on even the dimmest of days to make a small effort to put on something beautiful so that I may feel beautiful inside. When the sun shines, I open a window and bask in its warmth like one of my cats. I embrace a stuffed friend whose kind face offers peace and solidarity. Too many people disregard the simple wonders in life or let go of comforts because society deems them “childish.”
For those of you who are encountering similar hardship, I charge you to pay mention to anything that can bring you true happiness no matter the form so long as it cannot harm you or others. My therapist gave me wonderful, honest (and rather hilarious) advice recently: F*** society. Screw expectations. Stop should-ing yourself. You are everything you need to be. My advice: Delight in everything possible. Be healthy, but delight. Time in well-being can be far too little, and it is not worth wasting it being afraid.
UPDATE: I am beyond moved by all of your responses and sharing your stories in turn. See the discussion here, on Facebook.