Noemi Khediry's disease began in January 2022 with a rather mild COVID-19 course. She recovered from the acute symptoms caused by the SARS-CoV-2 infection supposedly quickly. It was a few weeks later, in March 2022, that she suffered a total collapse. Initially, she experienced mild dizziness that lasted for a week. A clarification in the hospital did not bring any results.
While she was helping out with serving in her husband's restaurant, the dizziness became increasingly stronger. In the course of the evening, headaches and nausea emerged so that Noemi had to lie down. In the end, the dizziness increased so much that even when lying down, everything was spinning and she was no longer able to stand up. She felt extremely helpless and was frightened because she couldn't understand what was happening to her, where this extreme dizziness was coming from. She was worried about what would happen next. Even when all the guests had left, Noemi could not get up, she was taken to the emergency room and a 12-day hospital stay followed.
The arduous road to diagnosis
She was permanently in bed, had severe headaches, lacked appetite, and was accompanied by persistent dizziness. Even for going to the toilet Noemi was dependent on a walking aid. Still, she could only walk a few steps with support. In an upright position the dizziness was almost unbearable and even when lying down it persisted. After extensive examinations in the hospital and several disturbing suspicions, from meningitis to blood clots in the brain, she was diagnosed with burn-out. The uncertainty during the examinations and the various suspicions were a strong additional burden. As a result of the burn-out diagnosis, psychiatric treatment and physiotherapy were ordered.
Since an application for rehab was rejected by the health insurance, Noemi was discharged after 12 days in the hospital without any improvement in her symptoms. Noemi was distraught that she had not received any help from the hospital and did not know what to do next. She was barely able to care for herself, let alone her children, and her husband had to work throughout the day. She was granted support via Spitex, but the nurses only came about 2-3 weeks after Noemi was discharged from the hospital. In the meantime Noemi was on her own during the day and dependent on the support of her family.
It was her physiotherapist, who first realized that Noemi's not suffering from burn-out but probably from Long COVID. As a result, her family doctor referred her to the Long COVID consultation, but she had to wait half a year for an appointment. Meanwhile, on her own responsibility, Noemi's physiotherapist was already adjusting her therapy. In February 2023 she was finally admitted to the specialized consultation and received the definite diagnosis: Long COVID.
Noemi tried numerous therapies
As her Long COVID progressed, various symptoms emerged, the most common being word-finding difficulties, cognitive impairment, persistent dizziness, headaches, tinnitus, muscle failures in the legs, constant sensory overload, and exercise intolerance and fatigue. Due to the lack of support and the symptoms not getting better, the circumstances feel like being permanently caught in a downward spiral.
The troubling dizziness is accompanied by fear of falling over and stays throughout the day. The same goes for the headaches, which often lead to nausea. You never feel fully awake and can’t do as much as you would like to. The sensory overload, which sometimes makes even simple conversations or the trip to physiotherapy unbearable, makes everyday life additionally tough.
Until her appointment at Long COVID consultation, Noemi was forced to try numerous treatments on her own initiative, from physiotherapy and craniosacral therapy, to traditional Chinese medicine (TCM) and acupuncture, to occupational therapy, nutritional supplements of all kinds and various medications for chronic headaches.
"You feel lost, nobody is helping you. You have to constantly seek help yourself – it's incredibly exhausting, especially for people affected by Long COVID."
While some treatment attempts brought slight improvement, others led to a crash. After switching to a new medication for pain, a crash confined her to bed for a week. A stellate block in the summer of 2023 caused Noemi to have such a severe crash that she still hasn't recovered from it today, 2 months after the procedure. Currently, she is able to stay on her feet for a maximum of 2 hours a day.
Noemi had to go through numerous of such crashes after new therapies or supposedly mild infections, in the last months. During a crash, she is barely able to stand up and has to spend most of her time lying down. This repeatedly leaves Noemi, who is in her early 30s, dependent on assistance for almost everything for weeks at a time. Staying optimistic despite these setbacks is a big challenge. Hard-won minimal improvements are wiped away by a crash within a very short time and you are back to square one.
Although their strength is hardly sufficient, people affected by Long COVID are forced again and again to try out new treatments on their own initiative and to finance them independently, since many treatments are not covered by health insurance. One quickly feels abandoned by the health care system, even though living in such a wealthy country as Switzerland.
A positive note: Noemi felt well taken care of at the Long COVID consultation, where her problems at least seemed to be understood. Even now when questions arise, she turns to the consultation doctors, who support her. Nevertheless, this support came extremely late, and her health situation has not improved noticeably since then.
With the support of her children and partner, Noemi remains optimistic.
Without the enormous support of her husband, Noemi would hardly be able to cope with everyday life. In a household with two children (9 and 5 years old), it is difficult to find some peace of mind which is so essential for people affected by Long COVID. But both her husband and her children support Noemi wherever they can, show understanding and never blame her.
She is infinitely grateful for this support, but at the same time she feels guilty about having to give up the entire household and the many small everyday activities, no longer being able to work and for being so dependent on her immediate environment. Since her illness, Noemi can practically no longer drive a car since it takes up too much energy. The fact that she is always dependent on help makes her sad. She does not want to be a burden to anyone. Accepting this helplessness is extremely hard for a woman who is used to being independent.
Noemi is also very grateful for the support of her family, for example by watching over the children during particularly bad times. Especially since she knows what a great burden it is to see someone you love suffer. Her husband in particular has suffered greatly from seeing his wife in such poor condition.
Overall, however, as a person affected by Long COVID one feels left alone repeatedly. There is often a lack of understanding and imagination. Far too frequent you get to hear that you can't be helped. Noemi had to realize in the last 1.5 years that interest quickly wanes when one suddenly can no longer participate in social life.
For many people it is difficult to deal with the situation and to find the necessary patience. Others are simply unwilling to spend their free time with someone whose energy level is often insufficient to leave the house or hold longer conversations. These losses in quality of life are immensely saddening and raise the question of whether things will ever get better.
The financial burden of her inability to work, which has now lasted 1.5 years, also weighs heavily on Noemi. The fact that there are still people who doubt that the complaints of people affected by Long COVID are real is inexplicable for Noemi.
"Anyone who is that bad is willing to invest anything for improvement."
A rehab stay planned through the Long COVID consultation, was again rejected by the health insurance, recently. This decision confirms Noemi's sobering experience with the health care system and shows that she continues to be left alone as a Long COVID patient. Instead of rehab, Noemi was advised to seek more outpatient therapies, which she is now pursuing. From rehab, she had hoped to finally be in an environment where her symptoms would be taken seriously and where she would be understood. In the meantime, Noemi no longer expects to return to her pre-COVID-19 condition.
Now, Noemi wants to try IHHT therapy and hopes that this might help her. Unfortunately, this also presents the very next challenge, as the cost of the therapy is not covered by health insurance.
She hopes to eventually be able to go about her daily life again, relying on a stable state of health. She was always very active, besides her job as a computer course leader and her duties as a mother of 2 children, she did a lot of sports, e.g., in the gym or cycling. These hobbies and her job, which she enjoyed very much, were taken away from her by the disease.
Understanding and coming to terms with this discrepancy of going from being a functioning, working, active, young woman to being so much dependent on support from one moment to the next is an enormous challenge. And this process is made even more difficult by the great uncertainty as to whether things will ever get better again.
Before Long COVID, Noemi was an avid cyclist.
Despite the frequent setbacks, the financial and health uncertainty, Noemi holds on to her hope. It is important for her to use her experience to show the substantial impact Long COVID has on the lives of those affected, how bad the disease is and how important it is to take people affected by Long COVID seriously and to support them.
Even though it sometimes seems hard to distinguish small improvements from simply getting used to the condition, Noemi remains optimistic. She is convinced that her condition will improve. Above all, it helps to see how understanding her children and husband are about the situation. She is extremely grateful for her partner's support and for the fact that their marriage has now endured this difficult phase for more than 1.5 years. Noemi's closing word to others affected is:
"Even though it's very difficult to see, which I understand very well since I'm going through it too – it takes time, but it gets better! Even if it's just small steps, we have to hold on to those, and things will get better eventually."
