Talking About BFS: Need Advice

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LindsayCohen7

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Does anyone tell people about their BFS? It comes up at weird times for me - like the instructor at the gym asking why on a certain day (my muscles were a MESS!) I wasn't pushing, or my neighbor pestering my non-stop about running the marathon with her, or even telling my kids something more than "mommy's tired." I've even stopped mentioning symptoms to my husband, because I sorta feel like it's old news, and I just have to make the best of it. On the other hand, I feel like I almost need to explain why I'm not willing to exert my body physically until it's exhausted, or why I'm a bit pre-occupied at times. Just wondering how you all handle this "social" aspect of this!
 
Dont Know, at first I kinda metioned it to everybody, i mean everybody and get one of the following reactions :1. Yes your muscles twitch...... so .... whats the big deal?2. Oh.... that must suck ? I particularly hated that reaction.I guess, as time passes by it becomes something personal, i dont even care to tell anybody, thats why this forum is so useful to me, only a BFSer can understand what BFS truly means.Good Luck,Eduardo
 
In a way I see where Ed is coming from. You really get tired of people asking "Did you try taking some electrolytes? How about Calcium and Potassium?" Then you have to bite your lip not to say something like, 'Well, of course I tried all that stuff... do you think I'm an idiot?" I do talk to some people close to me about it so they understand that I am not bugging out on them because I'm not interested - just that I may not be able, that day, to deal with it. Otherwise - when they are just acquaintances I just say I am not feeling well but 'it' will pass quickly. I had a few bad experiences with people (people at work who I thought were friends)- where they acted sympathetic but really used it as a way to criticize later so avoid discussing it in most situations. Plus - I don't want people to view me as sick or disabled as I don't want to see myself that way. It's more like a come and go minor handicap most times. Unless I am cramping bad, or exhausted from symptoms in general, I try to not use it as an excuse and just pitch in there: you don't want to accept a disability that you don't have and further compromise yourself. You kind of have to suck it up and not give yourself an excuse to feel sorry for yourself - just keep moving forward and doing as much as you can. This way your learn coping strategies and how to keep positive.
 
Well, it's definetely not the first thing I tell people, but I have no problem mentioning it when it comes up to a discussion of health related issues. Before my neuro visit I actually mentioned it a lot, however only to close friends. If they asked "How are you?" I answered "Thank, I'm fine, except the fact that I might have **S and will get to know it for sure next week at the neuro's." Then, usually a description of **S follows, starting with "You've heard about Steven Hawking, the famous scientist in the wheelchair?".Now, after the BFS diag, I just mention a "neuromuscular disorder, probably benign". The usual reactions are:1. "Well that's weird..."2. "Have you been to the neuro's with that? What did he say?"3. "I hope it's nothing serious..."If people think I'm ill or disabled, I actually don't care. I just let them believe whatever they want to believe. My type of BFS has not impacted my physical abilities (at least to the present day), and everybody who thinks that I have a severe disease will be proven wrong when I tell them that I go the fitness center and enjoy long walks or running, and nobody has ever seen me be unable to walk up the stairs or carry something heavy. Nobody has seen my twitches so far, therefore most of the people I told about my BFS even forget that I have it because I look quite normal and healthy and don't complain every day.It doesn't matter wether we have BFS or not - disorders, diseases or quirks of any kind do not make us worse than other people or something. I have no problem with my BFS - there are enough people who walk around with stuff like Down Syndrome, heart problems, HIV, cancer, diabetes, severe allergies of all types - things that are much more serious than BFS. I'm not ashamed of my condition, I even don't even try to conceal that I tend to google my symptoms and do a lot of self diagnosis. What's the big deal, I mean, that's nothing bad, wrong, shameful or inappropriate.
 
Angst, perhaps because you are young this is not something that has occurred to you, but the same declarations you profess, in a middle-aged man, could raise fears of further or continuing illness from his peers and employer. Where you may choose to believe that health is not an issue, you have probably never known anybody who has been ‘let go’ from work because they were ill. So while I see your point – it shouldn’t matter that you have BFS or any other thing - this is an altruistic view and would rarely apply to business or social situations. If you are out in the world, it is impossible to not care how others view you – this is why we dress certain ways and use the correct language in specific social situations. My point is not that we hide our true selves but that we act in a way that we wish to be treated. Most people I work with and know casually think I am in excellent health – why would I want to alter that view? If they see me that way then it is a good thing, as it will encourage me to also see myself in that manner. The social animals that we are, we tend to see ourselves often in others' eyes and this reflection can be a learning situation for us.So, Linda, coming around to it again, I don’t think you owe anyone an explanation aside from those close to you. You never know how a person will react or if they will make an erroneous judgment because it is not a common ailment like a headache that most can relate to. A good thing about the forum is that you can come here and not feel alienated, and talk about pnhe stuff, hopefully to deal with symptoms and issues.
 
I totally agree with you AllGoodHere. Of course there is danger of losing your job if everything you talk about is a disease or disorder you have, no matter wether it's severe or not. Of course I wouldn't go to my employer and tell him the whole story of my BFS and anxiety, as he doesn't know much about neurology and might think that this really is a progressing neuro-disease. Health issues aren't exactly the thing you should talk about with your employer if you aren't REALLY ill and have to quit work for a considerable amount of time or something.So, just to sum it up: I won't start crying a river about my BFS, but I'm not hiding it either.
 
The employment issues are something to consider. I work for a public school district and have job security through a union contract. There are also laws governing negative employment actions taken based on real or perceived disability. I don't talk about it unless it comes up naturally in conversation. I agree we all try to control how we are perceived, however, I feel more comfortable when I am more self-disclosing even of negative things. I want to know people who know me really know me and that their treatment of me is based on some level of truth. I'm sure I'm deluding myself to some extent and think that most people really don't think much about what is going on with me as they have more interest in thinking about themselves. Krackersones
 
When I first developed BFS I was SO SO anxious that it wasn't funny (ring a bell anyone?!?!). Part of my response to this anxiety was to mention it to ANYONE who happened to ask 'How's it going?' (they probably wished they hadn't asked by the time I'd finished taelling them, plus rolling up my trouser leg to show them etc!!!) I found this sharing of my problem somewhat comforting even though the responses were variable (probably somewhat different to what you guys experienced because I work in the medical field so I got a load of medical responses, some of which were less than helpful! Very few people know about BFS so if you ask a friend who is a cardiologist, paediatrician, respiratory physcian etc... you will get an ill-informed response based on what they drill into us at med school, which is always try to rule out the most serious problems first - ALS In the case of fasciculations). Now I only mention it to people now and again. Simon
 
I don't make a point of telling anyone, but sometimes health matters come up in casual conversations and I'll say that about a year and a half ago, I started getting lots of twitching muscles which really had me worried for a while. Most people have reacted by saying something like, "Oh, I get this twitch in my arm (or leg or some other body part) and I've never really thought too much about it." It seems that lots of people have twitches and don't worry too much about them.Sandra D
 
It occurred to me today that when BFS patients tell people about their condition, the response is often based on the fact that EVERYONE experiences the occasional fasciculation... this is a completely normal physiological phenomenon. However, this contrasts completely with the sustained unrelenting heavy duty sensation that we all get. I sometimes wonder whether people fail to distinguish one from the other when we are recounting our tales of woe to all those who would care to listen! Simon
 
Simon,I think your point is why many doctors dismiss us at first. If they can't see the twitching because it's random and they can't sit there and wait to see it, they think we are being over anxious about a normal phenomenon. Maybe some of us are but some of us are not. Mine is definitely not the normal phenomenon. Once I developed a constant contraction in my left hand that can be seen on demand and had a muscle biopsy, my complaints were no longer dismissed in any way. When a doctor doesn't know what you have and can't cure it, many will just tell you it's anxiety because maybe it is and if it's not maybe it will reassure you. I don't mind being told "I don't know" if the doctor doesn't know. This is in fact what I've been told and I respect someone who acknowledges that I wouldn't being going from doctor to doctor if this wasn't something truely disrupting to my life and real but at the same time does not give me oversimplified explanations that I will know in time is not credible.
 

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