Medically Unexplained Illnesses: Not Just in Your Head!
Some chronic illnesses have specific titles, treatments and are much more easily understood by medical professionals. They have a consistent set of diagnostic criteria and so they are easy to diagnose, treat, and maintain. More research is done to find drugs and treatments that help with their treatment. While the illnesses are not curable, they are treatable and people can have a fairly decent quality of life with those illnesses. Some examples are diabetes, thyroid disease, osteoarthritis, and some psychiatric disorders like depression and Bipolar illness.
However, there are some illnesses, like Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFS), and Multiple Chemical Sensitivity (MCS), whose symptoms are not well-understood by medical professionals, and since those symptoms overlap with other disorders and don’t lend themselves well to specific diagnosis, they don’t get as much research funding and effort. Their causes are also not well understood either. Some of the hypotheses about their origin include viruses, childhood trauma, and injury, psychiatric disorders like depression and PTSD, and chemical reactions gone awry. The fact that the disorders are not well-understood does not mean that the disorders are any less distressing to sufferers. It also does not mean that they are simply “psychosomatic” (i.e., psychiatric symptoms masquerading or perceived as physical disorders).
There has been a great deal of struggle to gain legitimacy in the medical field for people who suffer Medically Unexplained Syndromes (MUPS), as people with these conditions have an added stress of not being believed by family, friends and medical professionals. If they could point to a well-defined diagnostic label like cancer or arthritis, they might have a chance to be believed by others. Some prominent medical researchers have suggested that these disorders are purely psychological and that if they just got Cognitive Behavioral Therapy, they would be fine. However, as anyone who has coped with fatigue, joint pain, cognitive dysfunction (like poor memory and concentration), or extreme discomfort after chemical exposure can attest, it is not just “all in your head.” Other people demean MUPS symptoms as “just being lazy” or “the yuppy flu.”
Fibromyalgia is perhaps one of the relatively better-researched MUPS and is characterized by joint pain in 11 of 18 tender points on the body, fatigue, insomnia, and at times cognitive dysfunction, like mental “fogginess” that makes it hard to concentrate, focus, or remember things. Many people with Fibromyalgia are limited in what they can do, how they can move, and sometimes even their employment opportunities and capacities are severely hampered by their symptoms.
Myalgic Encephalitis/Chronic Fatigue Syndrome
Similarly, Chronic Fatigue Syndrome can negatively impact fulfilling social and occupational roles, and sometimes they have to apply for disability as they struggle to even achieve minimal activities of daily living. CFS has many similar symptoms to FMS (fatigue, cognitive problems, and joint discomfort) but also can result in tender lymph nodes, flu-like symptoms, and “post-exertion malaise” which means that if a person does too much during the day, s/he feels even worse for the next day to a week. You may be able to see how this could interfere with holding down a job, raising children, having a social life, or running a household. While these disorders usually affect women, men can also be affected. Children and adolescents can become ill with CFS and FMS too, although it is much rarer. Most of the studies on CFS and FMS that have been done involve adults from 40-60 years old. It affects all socioeconomic classes as well as ethnicities.
Multiple Chemical Sensitivities
Multiple Chemical Sensitivities (MCS) is perhaps the most controversial of the MUPS and while it shares a few symptoms with FMS and CFS, it is more focused on negative reactions to exposure to chemicals in everyday products. Some of those products include cigarette smoke, gasoline, solvents, perfume, clothing dyes, dryer sheets, cleaning agents, pesticides, and hairspray. People have a range of symptoms when exposed to these types of chemicals, including respiratory problems, skin rashes, headaches, and cognitive problems. People with FMS and CFS sometimes have sensitivity to smells, but it is not a defining feature of either of those conditions.
Because there have been some studies where people failed to show increased sensitivity to certain agents in a laboratory, some medical professionals regard MCS as merely a psychosomatic illness. However, the reactions are real, cause physical and mental distress, and sufferers are not merely imagining what they experience. Instead of invalidating people’s experience, it seems more beneficial when doctors, friends, and workplaces can work with people who are sensitive to smells to make them comfortable, happy and productive. Other people might not perceive the same smells as threatening because they get no physical reaction. However, there are a number of factors that might contribute to some people’s extra sensitive reactions.
How to Cope?
This just scratches the surface of medically unexplained illnesses, which are often chronic and with uncertain prognoses. Many of these illnesses overlap in symptoms, but the sufferers have very real struggles in meeting their life roles and functioning well. Hopefully, with more understanding, research, and compassion, we can make their experience a little better and a little less stressful. I will be writing about them more in future blog posts, in specific the link between psychological factors and physical symptoms of these illnesses. If you need help in coping with your chronic illness, please do not hesitate to call me at 661-233-6771.