ME sufferer Jessika: ‘I'm lying here slowly dying’
Jessika Fernström was a high achiever, socially active and in the prime of life. Now she has been lying in her bedroom for four years, without getting the help she wants.
- ‘I can't survive this as it is now.
- This is my life now. You should have seen me before I got sick. I cared so much about my appearance and had a good life. Today I have to shave my head because I can't go to the hairdresser anymore, I have bedsores and I can't get help to keep my bed clean. At the same time, I have to fight to get the help I really need.
Jessika Fernström is 51 years old and before her illness started she was happy, well-functioning and very active, both privately and at work. She describes herself as a remnant of what she was before she contracted ME.
Classified as a neurological disease by the WHO, ME is often referred to as neuroimmunological. It is a complex multi-system disease in which the nervous system, immune system and energy production are affected.
ME affects 0.4-1.3% of the population, corresponding to at least 40,000 sufferers in Sweden.
The disease is characterised by a new and marked disabling energy deficiency and exercise-induced deterioration. This means that the condition worsens after both physical and mental activity that exceeds the body's individual tolerance level and can lead to long-term deterioration.
Other significant symptoms commonly experienced by ME sufferers include flu symptoms with fever, headaches and muscle aches, memory and concentration difficulties, sensitivity to pressure and orthostatic intolerance.
Source: RME - National Association for ME Patients
She fell ill with the neurological disease in 2012 and since then it has only escalated. For the last 6-7 years she has been living in isolation as she has no social life anymore. ME, myalgic encephalomyelitis, is a complex multisystem disease in which the nervous system, the immune system and the ability to produce energy are affected.
Today, Jessika is basically bedridden and despite her many cries for help, she does not receive the care she needs to make her life function at even an acceptable level.
- ‘My illness is both physical and cognitive. It's like the municipality doesn't care about the cognitive part. There is one main symptom in my illness. If I go above my activity capacity, I get something called PEM which stands for exertion triggered deterioration.
The symptoms get worse
This means that for every thing she is forced to do, the symptoms worsen and it can mean weeks of heavy recovery.
Jessika Fernström ran her own business in marketing, among other things. Photo: Private
When we meet Jessika, the interview takes place in her bedroom. The blinds are drawn and only a dim lamp is lit at the side of the bed.
- I only switch on the light when someone is here, otherwise I'm always in the dark,’ she says, barely audible.
Next to her in bed she has folders with documents, her mobile phone, bottles of water and on the bedside table are medicines. She speaks in a low voice throughout because every word is exhausting. Lying in bed almost all day also leaves physical traces. Despite a bedsore mattress, she has a full set of bedsores over one side of her bottom.
- The assistance I have been granted includes cleaning my pressure sore mattress, they have even defined it more clearly now, but the home care service does not do this either unless I verbally instruct that it should be done and how, down to the smallest detail. That is precisely what I cannot do.
Denied sickness benefit
For four years, Jessika was also denied sickness benefit, which was devastating for her finances. She believes that the mental strain of having no income at all may have aggravated her condition.
The Social Insurance Agency eventually granted her compensation.
Jessika Fernström says that she still manages to go to the toilet by herself and manages to take something simple out of the fridge from time to time, even if this is beyond her capacity, to get something to eat. She explains that this is easier for her than instructing the home care service.
She has applied and appealed to the municipality, reported the responsible officials to the police, appealed against the rejection of increased support measures under the Support and Service Act and was also rejected in the Administrative Court. Last October, she wrote directly to the municipal council in the hope that politicians would be made aware that sick residents are not getting the help they need to even reach a reasonable standard of living.
- They did not even read my question about how the politicians will ensure that sick residents do not fall between the cracks in Stenungsund municipality and that they are not discriminated against because of disability. That's what pisses me off the most. They chose which parts they wanted to read out and gave no answers. Nobody seems to care.
Jessika Fernström was an active person before the disease flared up. She travelled, rode a motorcycle, worked as a marketing director and ran her own business. Today, she is bedridden most of the day. Photo: Private
Jessika Fernström describes herself as a very active person before the disease flared up. She travelled, rode a motorcycle, was involved with her children, worked as a marketing director and has run her own marketing company. It's a stark contrast to being bedridden in solitude.
- The law requires the municipality to provide me with at least a reasonable standard of living. In my current situation, I don't even have that. I have been fighting for an improvement for almost 4.5 years.
Children also affected
Some parts of her story are so powerful that she has to take short breaks during the interview. For example, when she talks about her children, now 21 and 23 years old, and the sadness of not being able to be there for them as she would have liked.
- ‘I was a very present mum before I became ill, but it became more difficult the worse I got.
Jessika breaks down on several occasions and then continues to talk about her everyday life and the help she is entitled to. Among other things, she will receive help with food and help with her hygiene.
- ‘I get food on average once a day and maybe I get hygiene once every three or four months. I have been tested and it shows that I have nutritional deficiencies. I cannot survive this as it is now.
Lying in the dark is a prerequisite for survival
Lying still in bed in the dark and in silence is a prerequisite for her to be able to eat and get the nutrition she needs. If she has to go beyond this incredibly low level of activity, her disability will get worse.
- This is what people don't understand. When I go over my limit, all the symptoms flare up. My recovery is on average two weeks once I've gone over my limit.
The disease is so problematic that even answering questions is too exhausting. When the home care staff come, they ask questions and sometimes need instructions. It's too much for Jessika and her wish is that all the services would be clearly agreed upon so she doesn't have to put in the effort.
- I can't manage to instruct. They ask a lot of questions that I can't answer and if I'm as bad as I can be, I can't even eat the food. The first thing that happens when the symptoms get worse is that I can't chew and the next thing is that my throat gets swollen and I can't swallow.
Wants to talk as little as possible
When she is unable to answer the home care worker, she does not receive the help, as it is a voluntary service. Not answering is interpreted as the person declining the intervention.
The next level to receive municipal services is via LSS, the Act on Support and Service, but she has been denied this.
In a medical certificate from November 2022, intended as a basis for the application for a support measure within the framework of LSS, a district doctor at Närhälsan certifies that Jessika Fernström has great difficulty coping with daily life on her own. Photo: Annika Sahlin Ottosson
- They deny me input via LSS because I am not considered to have sufficient disabilities and in planning meetings I am told that they think I have too great disabilities for the home care service to cope. So I end up falling through the cracks. How can I fight to get the right help when no one takes my situation seriously?
Home care staff are obliged to report abuses under lex Sarah. This can often be when someone has been subjected to various kinds of abuse, but there are other things that must also be reported. Jessika believes that someone should recognise her difficult situation before it is too late.
- ‘I don't understand why they don't report the concern. I'm lying here and slowly dying.
Must be reported
Abuse can be, for example, when a person does not get enough to eat and drink or does not get enough help to brush their teeth, wash and keep themselves clean. Staff can also report when colleagues do not treat the person with respect for their autonomy, safety and dignity.
Rickard Persson, sector manager for Stenungsund municipality's social services, says that staff should always report abuses.
- If we have concerns about a user, we must report them. It may be, for example, that they have had help and they need more help. Staff should contact the assistance unit or their manager if they have concerns. All staff can initiate this type of information to the authorities.
The obligation to report under lex Sarah applies to staff in the following areas:
Staff working with health and social care in social services. For example, in care homes for the elderly, in home care, in HVB homes or in the care of people with addiction.
Staff who provide support and services to certain disabled people under the Act on Support and Services for Certain Disabled Persons (LSS). This is the case, for example, in group homes and in personal assistance, unless the person receiving the support is the employer.
Staff caring for children, young people and adults in activities for which the National Board of Institutional Care (SiS) is responsible.
Officials who handle cases under the Social Services Act.
All staff in the organisations are obliged to report abuses. This applies regardless of how and by whom they are employed.
Source: National Board of Health and Welfare/1177
Jessika Fernström wants more help and has an ME diagnosis, why isn't she getting more help?
- If she has an intervention that she has applied for, it has been assessed based on needs. As far as I know, she has no LSS diagnosis. If she is to receive assistance via LSS, you must have a diagnosis that is linked to that legislation. Personal assistance is decided by Försäkringskassan.
Jessika questions Rickard Persson's answer:
- LSS according to category 3 is only linked to disability and not diagnosis. When it comes to assistance for less than 20 hours per week, the responsibility lies with the municipality and above that it is the Social Insurance Agency.
The ST magazine has a power of attorney from Jessika Fernström in which she authorises the municipality's responsible managers to answer our questions about her person, but Rickard Persson declines on the grounds that it does not feel ethically right to comment on individual cases. Therefore, the municipality does not respond to her information to us.
She has a certificate from 2022 where a doctor confirms that she has an LSS diagnosis, isn't that enough?
- The documentation that the doctor writes is included as a basis for decision. I will not go deeper into the reason for rejection regarding the individual. We always try to find solutions to the challenges we face. Sometimes it is more difficult to find common solutions.
Jessika says that on average she gets help with food once a day when she should have it three times a day, so about 90 times a month, what do you think about that?
- We have definitely offered her food 90 times out of 90. When we go in and make a visit, we have very clear instructions on what to do and it's from the user or patient's perspective. If they can express what they need, we do it. The user is always involved in deciding how it should be carried out,’ says Rickard Persson.
Jessika Fernström believes that this is the problem.
- That is exactly what I am saying. I can't cope and therefore don't get any help. Therefore the services are not adapted to my needs.
