When you have a chronic illness, the pain is always with you. I think it was a chronically ill person who said “if when you wake up in the morning nothing hurts, it means you’re dead.” The pain is there from the first minute you open your eyes until evening when you go to bed. If you are quite “lucky”, it accompanies you at night too. Sometimes you don’t even know it hurts. You’ve gotten used to it that much. Sometimes you go into remission. There may be days or even years when you are relatively normal. Then the pain returns. You feel that you are a little slower in movement, in thinking, that you are postponing things, that you seem to want to stay in bed for a while, that you are a little too indifferent with your loved ones, or your temper jumps too fast. You don’t know what is happening to you and you start analyzing yourself. You knew you were in remission, that the illness had taken a break and left you to breathe a little. You didn’t realize the break was over. Slowly, insidiously, the illness returned. The pain you are familiar with came back so slowly that you didn’t even realize it. But there is another scenario of exit from remission. The sudden, violent one. You got to pick up pieces of life, beautiful pieces, normal pieces, a job, a hobby, a relationship, you fit into the society of “normal” people, who do not know that part of your life, you told people something, but it seems that what you are saying sounds like a horror story, or maybe you didn’t tell anything, you just enjoyed life and people, trying to leave the illness behind. And one day, walking down the street, your leg starts to ache. You tell yourself that maybe you stepped crookedly, limp home, take a hot bath, and go to bed. The other leg starts to hurt the next day. And you remember. You have forgotten. All people have episodes of pain in life, whether they have a toothache, a muscle strain, maybe a broken leg or surgery. The human mind is shaped in such a way that it consciously forgets the pain. It remains present in the subconscious, as a kind of boogyman, a trauma, but consciously, people return to normal life.
In a chronic illness, the pain is always with you. It shapes your life. You can’t resist, it’s stronger than you. And it’s not just about shaping your life. It shapes your character. It can make you egocentric or selfish, you have the right, isn’t it? You are a sick person, suffering, you have the right to be protected, helped, cared for, shown mercy, you have all the rights in the world and no obligation, others are healthy, active, pink in the cheeks, can afford to laugh, be happy, at least that much they do, contribute to your miserable existence. Or you may become altruistic, rise a little above your pain so that you can guide others. No one understands a man with constant pain better than another man with constant pain. There are days when you can no longer bear the pain and you feel like screaming, running, crying, revolting, and in those days you need moral support. A man who does not go through what you go through does not understand you. Maybe he is well-intentioned, maybe he looks at you with compassion and honestly tries to help you, but he doesn’t understand you. There is no way. Healthy people have their busy lives, many and varied activities, busy schedules, good people and active in society, and you would better rest, stay in bed nicely, take your meds and not stay in the way of those who have and can do the job.
A chronically ill person feels guilty that he cannot do more, that he does not contribute more to society, to the well-being of his loved ones. The physical pain is invisible, not a missing leg or other disability that you can display as an excuse. What can you say to the old lady who reproaches you for taking a seat while she is standing? You are a young and strong person, you better get up and give her the seat. Try to explain to her that your neck hurts and you can barely keep your head straight, that you are suffering from that severe fatigue that only a chronically ill person knows, that you would get up, but your leg stiffened and you need help to get up and take your first steps? How come, you look good, at your age I moved mountains! Yes, but you didn’t have a chronic illness. Even the most well-meaning person can make the chronically ill feel inadequate, useless, outdated, lazy, or hysterical.
Society has absurd criteria for the protection of the chronically ill, with constant pain, constant fatigue, or other debilitating manifestations that even they, the chronically ill, do not perceive or understand. They are not explained when diagnosed what that illness is, what possibilities for managing that illness exist, they are not offered alternatives to treatments, they are not explained the side effects of the drugs that may occur. They are considered good milking cows for the pharma industry. If in America or Western Europe it is a luxury to be ill, in Romania it is a curse. A chronically ill person does not have a single disease, a single affected organ, but usually has a systemic illness with multiple connotations. It is seldom explained to them that all those illnesses that afflicted him are related to each other and he runs erratically from one doctor to another, of various specialties, because there is no team to look holistically at that HUMAN in front of them.
Hi, my name is Oana and I have a chronic illness, ankylosing spondylitis. It started 31 years ago, a few days before I turned 19. Ankylosing spondylitis is manifested by joint and muscle pain, fatigue, body stiffness, intestinal pain, and over time affects various organs, kidneys, eyes, bone density, arteries and heart valves. In addition, the treatment is aggressive and affects the stomach, liver and skin. Any form of stress, physical or mental, triggers a flare. When I started eating gluten-free and dairy-free, 8 years ago, I went into remission, meaning that the manifestations of my illness were significantly reduced to a level where I could lead a normal life, the only symptom that did not decrease in intensity it was fatigue. Now, the hormonal changes inherent to my age have brought the illness back with force. I don’t know what it will be, I don’t have the strength to look too far in life, I take every day as it comes, I make short-term plans. I can’t adapt the pain to my demands, so I’m adapting to the pain. I’m reshaping myself around it and discover new valences. I listen to myself and I listen to others. And I don’t accept bullshit anymore.