Yesterday at church I was given another person’s “theory” on what causes Fibromyalgia. As I was talking to the Sunday school teacher, the subject came around to the weather getting colder and I mentioned that I did not like this time of year due to my Fibromyalgia. I said the cold weather made my fatigue from the CFS worse and it made the pain from my Fibromyalgia worse.
He continued to talk to me and he asked me a few questions which I figured were leading to his FM theory. He asked me…
- When were you diagnosed?
- Were you married when you were diagnosed?
- How long had you been married when you were diagnosed?
- Did you carry the majority of the weight in the marriage (working, household chores, the marriage itself).
I replied with…
- I was diagnosed with the CFS when I was 21 years old. It was years later for the FM but I had FM then as well.
- I was married to my first husband when I was diagnosed.
- I was married for less than a year when I was diagnosed.
- I did carry the majority of the weight in the relationship in all aspects.
After I revealed this information to him, he went on to say that he has read and believes that people develop illnesses like Fibromyalgia whenever they have had to carry a lot of the weight of a relationship. He said it was the stress and strain of “doing it all” that causes these types of illnesses.
I didn’t have a lot of time to respond because the class was starting but I was sort of stunned. By now I shouldn’t be stunned by hearing these different “theories” but it still shocks me the things that people believe about real, physical illnesses.
I am usually very good at giving a mini education on these illnesses but when I am confronted at church (this is the second time at church I have been told these illnesses have a psychological background), I seem to go tight lipped. I think it is because I fear that the Bible will be used to reject anythingI have to say – then I wouldn’t know how to respond to that.
I have told my husband many times that I feel as though I have been chosen to bear these illnesses because I am supposed to make something good come out of it. I just haven’t figured out what that something is yet. Public speaking maybe? I’m not sure.
Sandy,
Stress and strain have legitimate physiological effects, not only psychological ones.
They could easily have triggered your fibro.
Glen, the problem of course is that when someone says “Ah, your fibromyalgia was caused by you having carried all the weight in your relationship”, the suggestion is that if you can just sort out your relationship, your fibromyalgia will go away, and that is not the case. Managing stress and pain makes chronic medical conditions easier to cope with, but it doesn’t make them go away.
While I agree that stress and strain can have physiological effects, they tend to exacerbate conditions and trigger attacks of existing conditions, not to cause them. The other issue is that there are people who have fibromyalgia who don’t fit this profile: they weren’t in relationships or under undue pressure at the time of their first attacks.
Sandy, I do think you have a future in writing or speaking about such issues. You of course have to walk the fine line between sounding defensive and being educational, but I believe you can do it.
Sandy – sounds to me like your Sunday school teacher was giving you his theory… one that has surfaced before about Alpha types and fibro. He did it non-confronationally, too.
I know someone who’s church collectively told him he has a spiritual sickness and his fibro would leave if he believed hard enough.
Blackbird – there are many possible fibro triggers. Stress certainly is one of them. Stress caused my heart disease, which did not go away after I dealt with the stress.
If someone tells you you should be okay after the triggering event that caused you a physical problem has been dealt with, it is on you to show them the error of that kind of thinking.
One analogy could be: Then a person with lung cancer should be okay after they quit smoking.
Hi Sandy
I think it’s really important to get good information about the latest research. The latest is that fibromyalgia is more correctly classified as a neurological disorder and will be treated by neurologists in the future. That makes so much sense to me and explains the varying symptomology we all experience.
I recommend listening to a podcast of a program on 3AW recently interviewing respected rheumatologist Dr Daniel Lewis.
Here’s a link to it: http://media.mytalk.com.au/3AW/AUDIO/051008_Sally_Cockburn.mp3
I would also recommend visiting Dr Lewis’s website and signing up for his free newsletter where he regularly summarises the latest research: http://www.pathways2wellbeing.com.au/html/s01_home/home.asp
I hide my fibromyalgia and live in fear of my employers finding out the extent of my difficulties (particularly the cognitive stuff), but it’s sometimes hard to hide limping, stiffness and how it all seems to end up on my face.
I am very grateful to my yoga teacher and my fellow yoga students (all living with chronic pain) who have been a useful mirror for the progress I’ve made and keep me positive when I’m going through a bad patch.
I wish you well and happy.
Simone
Further reading:
http://www.livescience.com/health/081015-church-mental.html
Thanks Glen and Traveling for your input and for the link, Glen. I do have a hard time not getting defensive when it comes to chronic illness sometimes and I need to stop and remember that our job is to educate.
Glen, thanks for the link. The story disturbed me on certain levels, but it was worth reading and knowing about.
I don’t want to seem like I am denying the physiological impact of stress, by the way. I certainly know what it feels like when I get stressed, and how my leg muscles spasm, and my gut knots up, and what that all leads to. My first reaction is always that the stress brings to light physiological flaws and problems already in the body, rather than creating them. However, as you point out, stress’ effect on the heart is clear and documented.
Sandy,
I think the point which some of the other comments have missed, is that you didn’t ask this man for his advice or ideas on why you have fibromyalgia or why the weather makes it worse for you. People would never tell someone who was going through breast cancer that it was caused by stress from carry too heavy a load in a relationship! I don’t understand why people feel they have the right to diagnose those of us with chronic illnesses. I understand your feeling defensive, I would have too. I know stress can be a factor in almost any illness, it can certainly make my symptoms worse, but it didn’t CAUSE my illness. There are many doctors out there studying Fibromylgia and they haven’t found the cause (if there is indeed only one specific cause) so why this man thought he had the answers is beyond me as well.
I think you were very diplomatic in how you handled yourself. I usually smile at people like this, thank them for their concern and let them know that my doctor and I are aware of what is best for me. Again, I don’t think people mean to hurtful, they just don’t understand how they come off sounding.
Thank you for a very thought provoking post and for your honesty in sharing what you feel.
Maureen
http://beingchronicallyillisapill.blogspot.com
I agree with Maureen. I am so sorry that you were the recipient of someone’s thoughtlessness. You mention going to church, so I thought that you wouldn’t mind hearing a verse from Romans 8:28, which states that in all things God works for good to those that love Him and are called according to His purpose. Yes, there is a purpose in all of our suffering. (I have fibro, Interstitial Cystitis and other chronic ailments…) We may never know all of the ways that God uses these things for our good, but look at the patience and tolerance that He is teaching you in dealing with others!!! Changing our character to be more like His is so challenging, but I know that I welcome the chance to be shaped into His image. Read Jeremiah 29:11 for encouragement…
On another subject, I think that most women carry much weight in relationships. That doesn’t cause all of them to have a crippling pain-filled disease! Perhaps next time all of us are questioned on our illness, a good response would be to just stop and say, “why do you ask?”. I think that gently turning the tables stops us from feeling so attacked and thus defensive. I have had my share of uninformed comments also; I am trying to have “ready” responses to minimize conflict!
May God bless all of you and fill you with joy in the midst of suffering.
Hi Sandy, You’re doing much good by sharing your experieces This post alone affirms my own feelings at being told the unintentional, yet insensitive, psychological theories about CFS/FMS. It’s hard that understanding often requires people to walk a mile in another’s shoes. I also have a hard time understanding why other’s need to come up with these theories, let alone tell us about them.
Stress effects bodies, stress can flare-up illnesses or cause genetically predisposed illnesses to come out…but Stress is not the cause of FMS/CFS. It sure is stressful having to deal with the lack of understanding though!
Thanks for sharing Sandy, Kerry
Hello Sandy
First time here at your blog ~ but I just wanted to add my two cents….I think you handled your advice giver at church quite well. We all have stories of how people have given us unsolicited advice ~ just what we need to get well. And just that quickly and easily too! Chronic illness seems to make healthy people uncomfortable~ maybe it makes them vulnerable or realize they cannot control all that happens in their life. Who knows?! I had a discussion about this with an online group I am in and one person said she always gives the same answer…”Thank you for your concern. Sounds like you need more information on what CFS/FM is, would you like a professional web site where you can educate yourself more? ”
ANyway, I am glad I found your blog.
Have a good day
Renee
Hi Sandy, I’m a guy w/chronic illness and I have to say I share the same reaction as you do to the comments. It is not surprising that you received these comments, and I’m sure they were not made with any ill intentions, but it still demonstrates the thin lin between mind-over-matter and it’s all in your head.
Personally it’s hard for me to believe that psychological stress is sufficient to trigger a full blown debilitating and often disabling illness. As one factor, I concede, but as a patient of 6+ years in the ME/CFS, fibromyalgia, and lyme disease community, let me be the one to say that many patients would love for the cause to be an emotional trigger. Why? Because knowing the cause, regardless of the stigma it causes, would allow patients to treat that cause & move on with their lives. Furthermore, there are available solutions for mental illness including CBT & neurotransmitter medications. However, I’ve been on antidepressants (for sleep disorder) and have removed every single potential stressor in my life, and the only thing that did was allow me to not get sicker. Did I get better? Of course not.
With that said, I also think you handled the situation beautifully. With the vast majority of the outside population, less is more. Even with my closest friends, I only spend 3 coffess explaining my illness. Plast that, if they still don’t get it, they never will unless, god forbid, it happens to them or a family member.