– I am actually an eternal optimist, but it has been difficult the last two years, says Marita Hole. She has been diagnosed with spinal muscular atrophy. In order to make everyday life go around, she must therefore have help with absolutely everything, except talking.
Due to the SMA diagnosis, the mother of two has greatly reduced her immune system, and a lung capacity of 37 percent. Therefore, Hole, who describes himself as an active and social person, has for the past two years lived very isolated for fear of coronary heart disease.
At the same time, she experiences that her illness has worsened as offers such as training and physiotherapy have fallen away. Partly because the offers have been canceled, partly because Hole has not ventured out the door.
Gloomy numbers
It is a fate she shares with many. Recent figures from the Joint Organization of the Disabled show that people with disabilities are still struggling during the pandemic.
- 23 percent state that they experience lost function
- 40 percent experience impaired physical health
- 34 percent experience impaired mental health
FFO Secretary General, Lilly Ann Elvestad, believes the report shows that a large group of people are still struggling with the effects of the pandemic.
– Disabled people have suffered greatly during the pandemic, and they still suffer. Services have not returned, very many treatments have not been resumed, and many live in isolation with the consequences it has for mental health, says Elvestad to TV 2.
– FFO Secretary General Lilly Ann Elvestad says the pandemic is not over for the disabled. Photo: Odd Arne Hartvigsen / TV 2
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The findings have much in common with FFOs report from 2021 and august 2020, and substantiates how difficult the last two years have been for the disabled. Elvestad fears that what was previously a trend has now become a pattern.
– What this survey shows is that it is about to settle down a bit, and that is not good, says the general secretary.
– Disabled people have suffered a lot, and they have suffered for a long time.
Lose offers
In Bergen, the mother of two Hole is presented with the findings in FFO’s report. She reacts strongly to the fact that the situation has not improved since the pandemic first broke out in 2020.
– That these figures have not improved in two years is a great shame. At the same time, there is absolutely nothing that surprises me. I think it’s a shame that it’s like that, and I know there are many who feel forgotten, says Hole.
– Marita Hole describes herself as both social and active. In the last two years, however, there has been a lot of isolation for the Bergen man. Photo: Private
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FFO’s report further states that 29 per cent of disabled people have missed treatment, controls or follow-up in the health care system as a result of the corona situation. Another 23 percent have missed therapy or exercise, which Hole believes helps explain why many disabled people have had it extra tough in the last two years.
– The large loss of these services about the offers we have, helps to make the situation serious, Hole says.
Gets sick from infection control
Paradoxically, infection control measures to limit disease in society have caused her SMA condition to worsen.
– I have had several health problems, in addition to my underlying disease, I get very sore back, legs neck and sit a lot still. I have not had access to any other training or therapy other than what I have been able to do myself, and it is felt both physically and mentally, says Hole.
– It can not be the case that you get sicker during a pandemic. You do not have covid-19, but still you get sicker because society shuts down, sighs the mother of two.
Secretary General Elvestad is clear that the loss of services can have major consequences for an already vulnerable group, especially when it lasts for two years.
– Lilly Ann Elvestad says the lack of treatment offers serious consequences. Photo: Odd Arne Hartvigsen / TV 2
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– You lose your level of function and simply become physically worse. Losing treatment over time can have major consequences, by getting worse. Losing exercise means that you are living with greater pain. If you are disabled and lose assistance, it gives you a demanding everyday life and it is clear that it can also affect your health in the long run, says Elvestad.
In addition to several services being discontinued, FFO also sees that many disabled people themselves choose to cancel services, simply because they fear being infected. The survey shows that in the last six months, 40 per cent have canceled services and offers as a result of the pandemic.
Elvestad points out that many disabled people are both in the risk group for the coronavirus, at the same time as they are hit hard by the measures.
– These groups are in a very dilemma, should they accept services or must they be afraid of being infected? Some of our groups have been very afraid of being infected, at the same time as they have felt the consequences of the infection control measures.
The nightmare came true
When the pandemic first broke out, Marita Hole was one of many who had to take a stand on this dilemma. She depends on assistants to make everyday life go around, which involves a high risk of infection. Although she and her family took as many precautions as possible, the nightmare became a reality at Christmas, when one of the assistants infected both her and her cohabitant with the virus.
– I was terrified and first started laughing. When we tested positive, I panicked and palpitated, thinking that I would be hospitalized or die, Hole says.
– Marita Hoen was terrified when she was diagnosed with coronary heart disease. Now she is looking forward to a more normal everyday life. Photo: Private
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Despite Hole’s severely reduced immune system, she recovered from coronary heart disease without serious illness. She was still just as dependent on help, which meant that the assistants had to use full infection control equipment in the time after the infection.
– It was a bit like being at the test station, they walked around with a full suit and visor and all. It was a bit weird to see them walking around the house, but luckily the kids thought it was fun, says Hole.
Now the mother of two is corona-free, and has decided to live a little more normally. Not because the fear of the virus is gone, but because she feels compelled to do so.
– Little by little I want to move more and more out, join my son in training and that kind of thing, because I notice that I need it. You should not have to stay inside for two years. It is not just me, but many who have been forgotten during this pandemic, she concludes.
Completely dependent on assistant: – Afraid of being infected
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