I can’t even brush my teeth anymore because my hands hurt
Federica is in her early thirties when pain begins to occupy every gesture of her day. Everything becomes a problem: walking, working, sleeping, brushing your teeth, but also sitting at work and cooking. Any daily gesture is a negotiation with one’s body. No obvious marks, no fractures, no visible wounds. Yet the pain is there. In Piedmont, in Federica’s condition, approximately 12% of residents live with a rheumatological disease. They are not just elderly people, as is often thought: many are women and adults between 20 and 50 years old, in the midst of their working and family lives. These are chronic pathologies, often autoimmune, they are called invisible diseases: invisible to the eyes, not to those who experience them.
The time that consumes the body
“One of the most serious problems is the time that passes before obtaining a diagnosis.” The symptoms begin, but do not immediately find a name: joint pain, extreme tiredness, stiffness. Tests that come back negative, visits that bring no answers. In the public system, in Piedmont, for a first rheumatological visit the wait can be up to 18 months. In some pathologies, such as psoriatic arthritis, the diagnosis arrives even after six or seven years. In the meantime, the disease progresses, silently, and the body changes”, he explains Raffaele Paonepresident ofAutoimmune Rheumatic Patients Association.
The burden of not being believed
For Federica the journey lasts more than a year. Nobody can tell her what’s wrong. Then, one day, her finger suddenly swells. “It looks like a sting, but instead it’s the disease,” he explains. To get answers she is also forced to turn to private individuals, paying for visits and tests: over 500 euros just to give a name to what she is experiencing. When the diagnosis of rheumatoid arthritis arrived in 2011, the relief was short-lived. A journey begins made up of attempts, changes in therapy and serious side effects. «With an intravenous drug, after half an hour my legs are swollen. They tell me the problem is psychological. It hurts more than all this not to be believed.”
Presentism: working with pain
Like many people with a rheumatological disease, Federica continues to work. She is recognized as having a disability of 50–55 percent, a percentage that in practice guarantees little protection. He enrolls in protected categories, but the possibilities are limited. “I’m too sick to work normally, but not sick enough to really be protected.” Many patients experience a condition called “presenteeism”: they are present in the workplace, but work in pain, with stiffness and chronic tiredness, struggling between their body and the fear of losing their job. «Calling sick often means exposing yourself to the risk of dismissal. To resist means to consume oneself. It is a continuous precariousness that adds to physical fragility”, continues Federica, explaining that the special lists have never been useful to her.
Bureaucracy and economic costs
«This has a heavy cost, on the one hand you find yourself having to invest a lot of money in visits and on the other you are without remunerative protection. Added to all this is bureaucracy. «Obtaining civil disability, Law 104 or accessing targeted placement is often a long and confusing path»explains Raffaele Paonemade up of insufficient percentages, rejected applications and months of waiting. Even when the diagnosis arrives, the difficulties do not end: the waiting lists remain long and many patients turn to the private sector for visits, even though they then have to return to the public sector to access biological drugs.
Treatment outside the region: Francesco’s story
The difficulty of being taken care of also emerges in Francesco’s story, told by his daughter Natasha. «For years dad has to go to Pavia every four months for biological therapies. At the beginning they were experimental, today they are also available in Turin, but managing to transfer the taking charge is complicated. Each passage means new, demanding, expected visits.” Francesco begins the journey to Molinette, but the illness worsens rapidly. «Only when I discover the existence of a reference center in Pavia, at the forefront at a national level, are we able to access more adequate care».
Biological drugs and administrative obstacles
“The GP tells us that the arthritis doesn’t stop, it slows down.” But to find a truly specialized center we have to move outside the region. “I don’t know if we haven’t been able to find something effective in the local area too, we certainly have to move on our own.” «Even now no one can connect us from the hospital in Pavia to the one in Collegno. Furthermore, prescriptions for the biological drug produced in Pavia are not accepted in Piedmont, they must be prescribed by a doctor operating in Piedmont. So even collecting the drugs is complicated.”
Living in the limbo of illness: control and fragility
Today there are innovative drugs that allow many people to keep the disease under control. But their management requires time, information and support. Early diagnosis and adequate therapy can avoid serious disability, job loss and social isolation. They can restore autonomy and dignity. Behind every number there are people like Federica who continues to this day to carry out every daily gesture that many take for granted. It’s not a little. Not for those who know what it means to not be able to do it. But every morning, when he turns on the tap, he knows he might start having trouble again tomorrow. Because the disease does not disappear, it lives in his body, it is just slowed down. And being in this limbo, between control and fragility, is the real pain that no one sees.
