Would you like to be part of a research study?


Dear Readers,

I’m wondering if you could please help me out.

I’m conducting a survey regarding people with medically unexplained illnesses and how they cope with their illness and make use of their resources, including medical professionals. Medically unexplained illnesses that the survey included are Fibromyalgia, Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, and Multiple Chemical Sensitivities. I’m seeking participants for this study who are affected by one (or more) of these illnesses personally, are 18 years or older, and are English-speaking. This qualitative questionnaire is meant to help service providers understand the needs and strengths of people with these conditions, how they cope with stress, and how they make use of the resources available to them. It is my hope that increased understanding and knowledge about these conditions will help improve service delivery and empower people with medically unexplained illnesses to make better use of the resources available to them. Once collected, I will analyze the data using grounded theory methods. I’m hoping that you can encourage anyone you know who fits the criteria to fill out the questionnaire, which is available at this link:

https://www.surveymonkey.com/r/YJJTRYC.

The questionnaire is anonymous and I will do everything in my power to protect the privacy and anonymity of participants. If you have any questions or suggestions regarding the survey, please don’t hesitate to contact me at lisalarsen69@gmail.com. I appreciate your assistance in this matter. If you’re interested in the results, please contact me at that same email address. Thank you in advance.

Medically Unexplained Illnesses: It’s not just all in your head!


Having a stigmatized chronic illness can make it more challenging to cope with illness. This is an introduction to CFS, FMS, and MCS, all medically unexplained illnesses. Having compassion and greater understanding for people with these conditions, may help sufferers reduce their stress.


A Brief Introduction to Medically Unexplained Illnesses

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, and so while they 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; hypnotheses include viruses, childhood trauma, injury, psychiatric disorders like depression and PTSD, chemical reactions gone awry, etc. The fact that the disorders are not well-understood does not mean that the disorders are any less distressing to sufferers. It also doesn’t mean that they are simply “psychosomatic” (i.e., psychiatric symptoms masquerading or perceived as physical disorders). There has been a great deal ofstruggle 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 their employment opportunities and capacities are severely hampered by their symptoms. 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, joint discomfort) but also have tender lymph nodes, flu-like symptoms, and “post-exertion malaise” which means that if they do too much during the day, they feel even worse for the next day to 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’s 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 statuses as well as ethnicities.

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 every day 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, cognitive problems, etc. people with FMS and CFS sometimes have sensitivity to smells, but it is not a defining feature of either of those conditions. Because there’ve 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 number of factors that might contribute to some people’s extra sensitive reaction. I will address these factors in the next blog post.

This is been an overview of medically unexplained illnesses, which are often chronic and whose prognosis is often uncertain. 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.

Everyday heroes


Lately I have been watching documentaries about luminary, courageous, amazing people like Nelson Mandela, Miriam Makeba, and Mahatma Gandhi. They all possessed strength and amazing grit to stand in the face of injustice and fight on anyway. Equally amazing is that they didn’t let their hardships well, harden them. They were still loving, forgiving people even when they had a chance for vengeance and retaliation. On a smaller scale, I think many people display courage and grit, as well as love and forgiveness, in their challenges. Many are unsung in their valiant efforts to deal with oppression, poverty, and many other social ills. They are heroic nonetheless.

Similarly, I think we can all agree that the people who have served our country and given their lives, limbs, and health for our country are brave and praiseworthy. As we approach Veteran’s Day, I want to give thanks and praise to not only the people who serve our country in the military, but also the people who have courage and strength in the face of everyday challenges that might feel like a battle to them.

For some people with depression, just to get out of bed in the morning is an act of defiance against the disease that insidiously aims to claim their wellness. For people with PTSD and Panic Disorder, leaving the house can take tremendous courage to face the jarring, threatening stimuli outside their cozy sanctuaries. Folks with chronic illnesses like rheumatoid arthritis and fibromyalgia can also have difficulty even moving their bodies, and yet they persist in getting up, doing what needs to be done, and marching on through the pain and fatigue. Even to reveal one’s true self to a loved one and face possible rejection, which might seem small to many, can be terrifying and mystifying to couples in an embattled relationship, or families with a history of dysfunction. All these acts of valor go unsung, and yet we do them because something inside us says, “I must go on. I cannot let this problem conquer me; I deserve a better life and so do my children and their children, etc.” So for all those unsung heroes, please know that someone appreciates the struggles you face, and how brave you are to persist in the face of opposition.