Hildur Felt Like a Burden on Her Family and Experienced Suicidal Thoughts

Originally published by Sylvía Rut Sigfúsdóttir on visir.is, Iceland’s biggest news platform, on October 11, 2020, 09:03

Hildur M. Jonsdottir suffered for years from pain and ill health due to autoimmune diseases and other chronic disorders, of some she was born with and others she contracted over the years. She was on disability and close to giving up, but was ultimately able to overcome her condition after a decades-long battle. She says it is very important that doctors don’t take the hope of a recovery away from people, as the health care system stands to save a great deal if individuals are able to reduce or recover from their conditions.

“It began with my illness. When I started to look at my condition in a holistic way, as a chronic problem, I could see that my difficulties started when I was born,” says Hildur, when speaking about how she ultimately got to a place where she could assist others.

According to Hildur, undiagnosed lactose intolerance, constant infections, other forms of illness, and repeated courses of penicillin were persistent markers of her childhood.

“We know today how damaging penicillin can be for your gut flora, but back in those days it was also chock full of sugar, so it really wrecked my system as a kid. Then the problems just started piling up throughout my youth. I was diagnosed with inflamed muscles (myalgia) at the age of seven, I had terrible digestion and started getting awful colon cramps at the age of nine. I had juvenile arthritis that wasn’t diagnosed till I was 14, despite years of medical examinations and interviews. I was diagnosed with juvenile arthritis and another kind of arthritis that only affects women and is extremely rare. On top of that, I was suffering from tension headaches and repeated lumbagos (Stiff back) at the age of only 14.

It just kept snowballing

The pain and illness had a direct impact on Hildur’s daily life. “It was always a struggle. I couldn’t go to gym class. At first, I was allowed to go swimming but then I was taken out of swimming class. I started practicing handball and absolutely loved it, but it wasn’t long until I was advised to stop. Already I was starting to feel as though there were no solutions to my condition. Throughout my childhood, I was always at the doctor’s, but it didn’t leave me feeling better or healthier. On the contrary, my problems just kept piling up.”

As a teenager, Hildur was already taking several forms of medication.

“I was taking blood pressure medication to treat low blood pressure and anti-inflammatory drugs because of inflammation and tension across my body, along with arthritis medication. At 21 I had an operation to remove thyroid cysts and I was being medicated for hypothyroidism by the time I was 19. When I had the operation, they found a tumor behind my thyroid gland, thankfully benign. I was also being monitored for an irregular heartbeat and dizziness.

I don’t even dare to think how it would all have ended if I hadn’t realized I could personally impact my well-being and health through my diet.

Studies have shown that a person who already has one autoimmune disease is 33% more likely to contract another one, along with other chronic conditions. And these keep piling on the individual, so it just keeps on snowballing.”

Was said to be risking his reputation

When she was 24 years old, Hildur was introduced to the late Dr. Valdimarsson.

“Dr. Valdimarsson was one of the first doctors in Iceland who started talking about the relationship between health and diet, and he was greatly criticized for it in the beginning. He was very well respected within his profession, department head at The National Hospital, and head of the University Medical Department. I was working in the health sector myself at the time when I started seeing him. I started experiencing incredible results, just by working on my diet. Other doctors whom I worked with, told me they didn’t understand what Dr. Valdimarsson was going with this, and that there was no scientific evidence to back up his ideas. “He’s just putting his reputation at risk,” is what they said in spite of the remarkable changes I was experiencing from adopting some of Dr. Valdimarsson methods. Most of what he was advocating for at this time, was cutting out white flour and sugar. Thankfully, today no one is under any illusions about how bad they can be for your health.”

The changes Hildur experienced from these dietary adjustments had an immediate impact on her quality of life and she kept making positive changes to her eating habits over the next months and years.

“I started feeling energized and pain-free in a way I didn’t even recognize. When people talked about well-being and endurance, I always thought they were exaggerating, because I simply didn’t know what it felt like.”

The system collapsed

She realized in the next years, however, that it wasn’t enough just to change her eating habits.

“I lived under a great deal of stress. I was alone with two young children at the time, pursuing university studies and working part-time. A typical Icelandic woman. We always need to take on everything at the same time, but thankfully I think this is changing for the better.”

Hildur was pursuing a degree in psychology but had previously studied business after finishing secondary school.

“Psychological strain, trauma, and other factors made it so that the diet wasn’t enough. I was starting to experience all kinds of symptoms all over again. And in the year 2000, I was in a very bad car accident which more or less caused my whole system to collapse again. My batteries were just empty, and I couldn’t cope with any of it. I never gave up on finding a solution, though, because I wanted to believe that since I’d found it once, I must be able to do so again.”

Tried every course

At this point in time, Hildur was suffering from serious fibromyalgia, very bad migraines, extreme muscular and skeletal pains, a debilitating lack of energy, constant fatigue, osteoarthritis, arthritis, a hypoactive thyroid, an irritable bowel, and many other symptoms. The message she received from the health care system was that she needed to accept her lot in life and find ways to live with her disabilities. But Hildur refused to give up because she was convinced that all her symptoms and conditions had a common origin.

“It was really a 15-year search and struggle after the accident. I tried everything imaginable in my eating habits, tried every different diet, no matter what it was called. My lowest point came in 2012. I was completely drained after finishing a particularly exhausting project at the same time as one of my nearest and dearest was battling a serious illness.

With all this additional stress, my emotional health collapsed as well. After experiencing exhaustion, pain, and poor health for such a long time, a deep depression and anxiety settled in. I was seeing a psychiatrist and was on anti-depressants.

Following that, I went through rehabilitation at a clinic for fibromyalgia patients and related diseases. It didn’t start too well, however. My condition was so bad that I was sent home for eight months and wasn’t allowed to do anything before I was considered well enough to go through their treatment program. At this point, in 2012, I gave up on finding a solution myself. No matter what I tried, it often seemed to improve my well-being for a short time, but the overall trajectory was always downwards. I always say that at that time I gave myself over to the health care system.

I just thought that I would never find the solution myself and, consequently, that they now had to save me. I started taking every form of medication handed to me. I had always tried every medication I was prescribed but quickly discarded them because they never seemed to provide much relief. But at this point, I said, “I’ll be obedient and well behaved and I will do what I’m told.”

But it wasn’t like I had previously refused help from the health care system. I had already gone through therapies and rehabilitation programs in three different rehabilitation centers, as I was constantly looking for solutions.”

On my feet two hours a day

For the next three years, Hildur went through a traditional program of therapy and medication.

“It didn’t help me at all. Maybe the painkillers helped me get through things day-by-day, but in the long run, I just became more exhausted, agonized, and heavier.”

At this stage, Hildur was on disability benefits.

“I had enough energy to stay on my feet for around two hours a day, and my life had lost all enjoyment. I was not yet fifty and I was looking to the second half of my existence without any real quality of life. I would be an invalid and a burden on all my friends and family. I dreaded becoming a grandmother because I wouldn’t be able to take care of my grandkids. I couldn’t contemplate a future like this and had to face up to the idea that the solution I had spent the last three years looking for wasn’t there.”

Hildur M. Jónsdóttir says the health care system needs to transform the way it treats people with chronic pain. She says it is extremely important that doctors don’t deprive people of hope and that they be more open to non-pharmacological forms of treatment.

Driven between buildings

Hildur decided to give herself a full-time job in the form of researching and reading everything she could get her hands on online and look for a new way forward.

“It took me two years to fully rebuild my strategy. Among other things I tried, I went on a very extreme diet in a clinic in the U.S. where you only ate raw foods and went on juice cleanses. Several of the staff were doctors and nurses, along with other therapists. It was a very expensive treatment, but I thought I had to start somewhere.”

For the first few days she spent there, Hildur had to be driven between buildings in a golf cart because she didn’t have the energy to get there under her own power.

“Within those three weeks, I started being able to walk between buildings, was feeling better, and had the energy to stay up till around four or five in the day, at which point I had to rest. It gave me some hope.”

Not everything Hildur tried during this period worked. For example, the clinic placed a big emphasis on the benefits of wheatgrass, which only exacerbated her symptoms. Nonetheless, it was an excellent beginning to her journey back towards full health.

In the six months following this course, I managed to go off all medication and became symptom-free. I was on this diet, the most intense cleansing diet you can imagine, for a whole year.

Alongside this she kept reading studies, researching doctors – more and more of whom were making great strides in helping people with similar conditions to her own – and investigating what methods they used.

“I thought my recovery must not only stem from the fact that I no longer cooked my food. There must be something more complicated going on. The problem must lie with something that was no longer in my diet. Maybe it wasn’t really related to what was in the food I ate, but what had been taken out. That’s when I started experimenting.”

Prisoners in their own bodies

Hildur experienced a renewal of symptoms and illness and had to start taking medication again while she was experimenting with her diet, but she was always able to go off the medication once she found the right balance in her eating habits. “Today, I wouldn’t be diagnosed with any of my previous conditions. I am fully energetic and happy and can take advantage of all the opportunities life has to offer.”

For the past two and a half years Hildur has run a program for people who suffer from chronic pain, illness, exhaustion, or other issues. A lot of people come to her with chronic issues relating to arthritis, heart disease, diabetes, respiratory illnesses, burnout, and other long-term conditions.

People with autoimmune diseases or other chronic conditions ultimately become prisoners in their own bodies and captives of their condition. Their condition starts to completely dominate their existence in such a way that they lose all sense of agency.

Hildur says she has been able to help a lot of people reduce their symptoms and their pharmaceutical consumption, and that some people have been able to become completely symptom-free from their diseases.

“The program is pretty strenuous, however, and people have to make very drastic changes to their lifestyle in order to make that kind of progress. But how much is our health worth? Among those who take part in my foundation course, around half of them keep working with me for an extended time and make really good progress.”

A great deal needs to change

Hildur stresses the importance of her clients adopting these changes in consultation with their doctors, but it varies greatly how receptive or supportive doctors are to these methods.

“What is fantastic is that there are now young doctors, newly graduated from school, who are specializing in fields that are much more open to the kinds of methods I am working with. The more people there are who have similar success as me, the more noise we can make about our ideas and our work, the more prominent we will become, and the more impact we can have on prevailing attitudes. The research I build my program on is also moving closer and closer to the health care system. Previously it had really just been a grassroots movement. I predict a complete change in the way we treat chronic conditions in the next 20 to 30 years.”

Hildur considers long-term planning and providing personal support throughout the process, as she does for her clients, to be essential in achieving success.

“But due to a lack of funding, the health care system is constantly impeding those who dream of implementing long-term solutions within the rehabilitation sector. Doctors have less and less time with each patient and there is a constant pressure to find speedy solutions. There is so much that has to change in our society in order to improve public health, health care services, food production, the pharmaceutical industry, and our social structure as a whole.”

Hildur says she is not at all opposed to medication. “But the difficulty is that when it comes to long-term conditions, like the ones I have had to deal with, pharmaceuticals are really just a crutch, not a cure. If we are taking medication, we also need to be working towards other lasting solutions. Medication can have difficult and chronic side effects that ultimately just compound the problem.”

Working full-time

Hildur says her health has taken a complete turn in the past five years, and that now she typically takes no medication at all.

“The only thing I have to contend with now is that if I do not manage to hold steadfastly to my program, the old migraine headaches start creeping back in. Today I work full time. If I weren’t working and could completely devote myself to managing my diet and lifestyle, I would be effectively free of symptoms and medication. But since I don’t have 100% control over my environment, occasionally something questionable sneaks its way into my diet, and then I sometimes experience mild migraine attacks and need to take migraine medication. But it’s not comparable to what it was before. It was often so bad that I had to go to the hospital for pain relief and my migraine attacks would last several days. Migraine pain was a daily feature of my existence back then.”

To get to this place, the first step was to cut out everything that could possibly trigger the symptoms. Something which is not necessarily easy for everyone to do.

“For a while, you have to cut out a lot of food, but as soon as the system has regained its balance then it’s possible to start eating a more varied diet and adding some color to your existence,” says Hildur and laughs. She says it revolves less around what people are eating than around what they’re not eating.

“For instance, gluten is very harmful to people who are ill in this way, as is sugar.”

By 2017 Hildur was in good health and people had started coming to her for counselling. A year later she started an online program for people in situations similar to what hers had been.

“I often say it’s the most hard-working people who come to me because it’s the most hard-working people who keep trying and fighting until they get so ill that they can’t cope with their work or even with life. It’s the most hard-working people who end up completely at the mercy of their condition, and they’re the ones who never give up on looking for a solution. As a society, we have to investigate what is causing chronic conditions and long-term illness in the population.”

Grateful but not resentful

Hildur was fifty years old when she found a way to live free of the pains and symptoms that accompanied her condition. She is not resentful about not having gotten there sooner, however, and is grateful for her life today and for the future that awaits her.

I always knew there would be a solution, I just had to find it. I’m also lucky in that today I can use all the trials I went through to be of use to other people in overcoming their hardships.

Many of her clients have had serious frustrations with the health care system, “after going from doctor to doctor for decades to no avail, but then regaining their health in a matter of months through my health program. But we have to understand that the solution to these issues hasn’t fully arrived in the health care system and that the system isn’t in a good position to give this kind of support today, given how it is run. The work I have been doing is based on studies done after 2006 and it is said to take 17 to 20 years for grassroots research to make its way into the public health system.”

Hildur M. Jónsdóttir FOTO: VILHELM GUNNARSSON/VILHELM GUNNARSSON

Never stopped trying

Hildur says she is concerned about the direction research is taking, and about where the priorities lie.

“The scientific community sees that there is a connection between physiological causes and various autoimmune diseases. But the response is not to figure out how we can treat the root cause but to find drugs that can interrupt the connection or change the physiological origins. That’s where the money is and that’s what most research is focused on.”

Attitudes within the health care system are also hugely important.

Throughout my illness, I was always being discouraged. No one had any faith in my experiments or methods. I was told I was so sick that hunting for solutions, and experiencing the consequent disappointment when those attempts didn’t work, would only make me more ill.

She’s very grateful today for never having stopped searching and trying, even though the road was often difficult.

“In my darkest hour, I was on anti-depressants, felt completely defeated, and was experiencing suicidal thoughts because I saw myself as being a burden on my family. I couldn’t see myself taking care of my grandchildren, and family has always been incredibly important to me. I started thinking this way in order to ease the burden on those whom I loved the most. People in my position have taken their own lives. I know of examples of this. It is said that conditions of this sort are incurable but not life-threatening, but in fact, they can be, because of the suffering and helplessness they cause.”

The form didn’t exist

Hildur says she never forgets to take pleasure in all she can do today.

“I am a grandmother now. I have two grandchildren and a third on its way.”

The little moments, like sitting on the floor and playing with her grandkids, taking them berry picking, digging up potatoes with them, or even just holding them, mean everything to Hildur, since, for a while, she feared she would never be able to take an active part in their lives.

“None of this could have been a reality five years ago.”

Hildur says she went for a disability assessment, was deemed as being 75% disabled for many years, and was on welfare. In 2018 she got off disability, but she was shocked at how complicated it was to leave the system.

The system makes no provision for this. When I went to look for a form where I could ask for being taken off the benefits, on the Social Insurance Administration’s website, it didn’t even exist.

Savings for the health care system

When she asked to be taken off welfare she was told to wait until her disability assessment expired in a few years’ time. She was advised to try all sorts of things, such as to take only one payment per year, to wait a little and see, to wait until the end of the year because otherwise, she might have to make repayments, etc.

“But for me, it was a matter of principle. I didn’t want to be on disability if I was no longer ill. I would automatically get a discount when I went to the doctor to have a blood sample taken, but that felt inappropriate now because I could pay the full price. There is so much built into the system for which I would automatically get preference or special treatment that I no longer felt entitled to. That’s why I took this path in order to get off of disability.”

Hildur says the health care system saves a great deal of money for every person who regains their health, gets off of disability, and re-enters the job market.

“People with autoimmune diseases and other chronic conditions constitute by far the most expensive group because they are always looking for solutions. They are always going through expensive medical examinations and looking for explanations for their ill-health. I was talking to psychiatrists, neurologists,