Abnormal but unspecific
An interview of my friend Riikka, done in the spring of 2007. Some tidbits (including her name) have been changed to protect her identity, but other than that everything is 100% true. Unfortunately.
At 25, almost half of Riikka's life has been spent with being sick and visiting doctor after doctor. She would surely have better things to do. There's nothing she hates as much as doctors and she has nightmares about visits where she's humiliated. That hasn't been unusual. Even now, doctors treat her condescendingly, like a kid. It took over a decade to obtain a diagnosis.
There have been dozens and again dozens of doctors over the years, neurologists, opthalmologists, infection specialists and rheumatologists. It certainly feels like they couldn't care less what happens to Riikka. They're constantly trying to push physiotherapy, something Riikka has been doing for years, even though she doesn't have much mobility left any longer.
Riikka is sick with something many doctors don't even believe in and that officially doesn't exist in Finland, even though it has been included in WHO's official ICD-10 for a long time. In many countries it's known as myalgic encephalomyelitis (ME). In Finland it's known as chronic fatigue syndrome, but translated the name seems to be even more about tiredness. But it's about much more than being tired.
Riikka would much prefer the term ME. "Chronic fatigue syndrome is a misleading name and doesn't match the severity of the illness at all. It gives a totally incorrect picture. Being tired is very different from being dependent on other people due to severe neurologic symptoms. Tiredness goes away with sleep and is entirely different from the fatigue and total exertion intolerance that I experience."
Doctors appear to be stuck with the idea that if the patient doesn't improve, the problem is the patient who doesn't want to get better. Riikka's biggest wish is to become well again, or at least to get into better shape again. A backup wish is to get a powerchair or a mobility scooter, as the muscles in her hands lack the energy needed to get around in her ordinary wheelchair.
Riikka fell ill on the seventh grade, at the age of 13. A bad flu and the horrid headaches accompanying it forced her to lie down flat for weeks, eyes covered due to the sensitivity to light. She missed three months of school. The mother of a girl another class called Riikka's mother, complaining that her daughter was skipping school and trying to get things easier than others.
Riikka eventually recovered from the flu, but was left with severe fatigue and muscle weakness. She can only walk very short distances and stand for a few minutes at most. She cannot watch TV or read at all, because her eyes will not focus normally. It's not a good idea to try, as that will result in severe vertigo. Even if she keeps her eyes closed then the room will continue to spin around.
Despite all of this Riikka completed secondary school and high school. She spent the breaks resting on a mattress in a darkened room. In the matriculation examination she received the questions on an audio tape. She continued her studies and achieved a bachelor's degree. Even her thesis focused on the life of disabled people.
Lately Riikka's condition has rapidly deteroriated and she isn't making much progress with her studies. In 2005 she was still working along with her studies. She attempted a new job in early 2006, but even office work turned out to be impossible due to her fatigue and concentration problems. Now Riikka is dependent on a carer the welfare office has granted her for 15 hours a week.
"It's incredibly hard to admit to yourself that you really need that help. I would like to have privacy and space for living, instead of being forced to have someone over to assist me." When Riikka was doing better she actually worked as a personal carer for the elderly, but she never thought she'd be in the same situation - at least not in her 20s.
Before getting sick Riikka used to be athletic, but also enjoyed reading books. Her hobbies included badminton, swimming, canoeing, dancing, scouting and singing in a choir. Now the pastimes have changed. "I browse the Internet, write email, try to achieve as many study credits as possible. I have doctor visits, blood work and MRI scans," she says, sneering.
Her Internet use is made possible by a laptop computer awarded for her studies by Kela. It has a speech synthesizer program which reads all text out loud in Finnish or English in a mechanical robot voice. If her studies don't progress enough, she may lose this important way of communicating with the outside world.
Besides the computer Kela hasn't given Riikka much support. She gets housing benefits and the lowest level handicap benefit, 79.83 euros a month. The two combined aren't even enough to cover the rent of her one-bedroom apartment, so she needs financial aid from her family. Riikka has applied for a higher level of handicap benefits, but her applications have been turned down even after appeals. According to Kela her illness doesn't cause her considerable handicap nor does she require any regular assistance.
Understandably, Riikka disagrees. "The law about handicap benefits clearly lists certain criteria. If you fulfill this criteria, how can they turn down such an application? If you need daily help with household chores, transportation, washing your hair and even just to stay alive and you still can't get the benefit, there is a discrepancy between the guidelines and the reality."
The bureaucracy has other strange features as well. Riikka is granted 18 trips with the disabled taxi every month, though they aren't free, but cost a few euros each. They are a great help with the transportation, but the usefulness is limited by the rule stating that they cannot be used for doctor visits or physiotherapy, as the money for those trips comes from a different budget.
During the years Riikka has gone through hundreds of blood tests, several MRI scans and X rays, an EMG test which measures muscle function, a cardiac stress test, a cardiac ultrasound, muscle biopsies, a salivary gland biopsy and lumbar punctures. Most tests have yielded results that are "abnormal, but unspecific". That is, the doctors don't have the slightest clue on how to intepret them, so they're labeled as useless. Despite this the tests are run over and over again - just in case they'd get meaningful results by chance.
The neurologic VEP test (visual evoked potential) which is used in the diagnostic of e.g. multiple sclerosis was one good example. "The nurses thought my VEP results were very strange. One doctor considered them clearly abnormal, one said that they were mildly abnormal. They didn't know how to intepret them, so the results were never recorded in the papers."
The same happened with the stress test. Riikka was expected to ride the exercise bike for two hours, which the doctors apparently found completely reasonable. She struggled for five minutes. It took weeks to recover from the exertion. During the first days her mother had to feed her and help her to the bathroom.
It hasn't been easy for a once athletic young person to come in terms with loss of mobility. "It's no trifle to accept that you're bound to a wheelchair, I'd almost rather just stay home. When you have no visible handicap or illness, it's very hard for people to understand. If you are in a wheelchair and take one step to get to a bench, people look at you like you're using the wheelchair for fun."
Many people treat a wheelchair user like they were mentally retarded. When Riikka went to a café with her friends, the waitress asked the others whether Riikka's pie should be heated up. Luckily she has those friends who support her and come for a visit. Sometimes she visits them in return - at least if the building has an elevator. "Otherwise they have to carry me up the stairs."
"People should think a little more and not just start complaining if a young person uses the elevator. They are like 'today's spoilt kids, can't even bother with the stairs'. If I could I'd run up a thousand stairs! I guess I would have to carry my head in my lap before people would understand that I am sick for real."
The symptoms aren't limited to fatigue, muscle weakness and impaired vision. Riikka's everyday life includes cognitive problems, problems with coordination, dizziness, light and sound sensitivity, acid reflux, irritable bowel, neuralgic pain and paresthesias (abnormal sensations). The muscle fasciculations and tremor often create visible twitching. She cannot tolerate heat and sleeps with her windows open, yet still suffers from night sweats.
"The most insidious thing is that you can force your body to do things you really can't do. It's difficult to stay inside the envelope when the restrictions are just too great. Any effort that exceeds those limits is followed by indescribable fatigue. If you do too much, the consequences can last for weeks."
The heart symptoms that are often a part of CFS are particularly nasty and frightening in Riikka's case. Her pulse is often 120 when she wakes up and it has sometimes risen up to 160 - while she is resting in bed. At the same time her blood pressure can be down to 80/40. The cardiologist couldn't help. "They say the pulse is too high, tachycardic, but they don't have anything more to say about it."
One would think that with this horrendous myriad of symptoms the doctors would be sympathetic and eager to try different treatments, especially since there are so many things that could help. Sadly Riikka hasn't been given much of anything but psychiatric drugs and a trial of corticosteroids at the infection clinic, which didn't help her.
She's tried reiki, pranic healing, antioxidant therapy, zone therapy and some specific diets, undergone psychotherapy and received acupuncture with a doctor's prescription at the hospital for rheumatic diseases in Helsinki. The acupuncture temporarily relieved the pain, but didn't help anything else. There's no doctor she can ask for help or advice, no charity or support group that would give assistance.
Many doctors are convinced that her condition is due to bad attitude or other psychiatric problems. She's commonly asked "Do you have friends? Are you depressed?" (Wouldn't you be?) One shrink believed that Riikka's chronic back pain was caused by morally spineless parents. Another doctor commented on her eye problems "how do you know that other people don't see the world like you do?"
Riikka's condition keeps on deteroriating and it doesn't seem likely that she would improve without proper treatment. The prognosis looks grim. Some people with CFS/ME are completely immobile and have to be fed by a tube. Some even die of the complications of the disease, such as opportunistic infections, neurologic damage or organ failure.
"I'm not sure if I'm most afraid of death, but the continuing decline of my function and abilities to even worse than they are now, and the total abandonment caused by the lack of an acceptable diagnosis." Riikka believes that any other neurologic diagnosis would get her more humane treatment and the financial and practical support she needs, not to mention stopping the doctors from abusing and humiliating her.
"I am young, I would like to lead a normal life - go to work, go out, travel and have my own family. I'm tired of hearing that I'm hypochondriac, lazy or don't try hard enough. It's senseless to believe that a young person would like to be a prisoner bedridden in her home."
Update (May 2008): There are good news and bad news. Riikka has got on disability - obviously not for CFS/ME as that would be impossible, but for another condition she has - and almost has enough money to live on now. She has managed to keep her laptop despite that, and in fact they are giving her a new laptop. She also has an electronic wheelchair now, though she would need to move house to be able to use it independently, as she lives on top of a flight of chairs and suffers from vertigo, so she could accidentally fall down the stairs. Unfortunately, her condition is still deteriorating and the abuse from the doctors has just got worse. More about this later. She has had a prescription for LDN since last summer, but she's afraid to start it, because in the past immunostimulants have made her worse, despite my reassuration that thousands of people with very severe autoimmune diseases have taken LDN with no ill effects.