People who have "Foot in Mouth" (i.e., speaking-without-thinking) Syndrome
Foot in Mouth experiences (why don't people realize this does NOT help us?)
NOTE: I apologize in advance to anyone who is, in any way, affected by the condition "foot in mouth" or "hoof in mouth" disease. I am using the expression "foot in mouth" figuratively (to discuss how so many speak without thinking first.)
In this next section I am going to (start to) go over the “foot in mouth” syndrome many people seem to develop when they come across people who have “invisible disabilities”. This is not a complete list (far from it). Feel free to add comments if you have gone through similar experiences. I have found that sharing it with others can have very therapeutic qualities.
When I was first diagnosed with MS I was a complete wreck. The chair of my office kept me busy the day I found out (so busy that I wound up have to stay and work late). I didn’t mind this, however. I truly believe he was trying to take my mind off of what was going on since he saw how upset I was about it. If I had been married at the time I don’t think I would have been happy about being kept busy. However, when I was diagnosed I was dating someone who wasn’t the most helpful person in the world (emotionally) and I felt I didn’t have anyone I could talk to.
To make matters worse, the Chair’s secretary started treating me very badly. She was furious with me for staying at work the day I was diagnosed and she made sure I knew it. She also made sure I knew how upset she was with me for working late that day. According to her I had a "lot of nerve" staying in the office and bringing everyone "down with me." She also told me not to come back to work until I "got over it." It wasn’t until about a year later that I found out her mother-in-law had MS and that, as soon as she found out I had it, she put me in the same “category” as her in-law. I also had some really thoughtless comments shared with me the week of my diagnosis. Bear in mind I was working in a hospital neighborhood at the time of my diagnosis. I would have thought most people in the medical profession would know better but I was very much mistaken.
One person was trying to collect money on one of the main roads and he walked up to me and told me that MS had “killed” his sister. He then asked for money and I told him no, that I didn’t appreciate his approach and that I wouldn’t give him a penny. He acted horrified and said “I’m only trying to help people with MS!” to which I responded “I JUST found out I have MS and you are in a Hospital neighborhood! Do you have any idea how awful it was to hear what you just said as a newly diagnosed MS patient?!?” He apologized and walked away. I had a woman then come up and tell me she was really proud of me for “putting him in his place” (she was related to someone with MS and he had upset her too but she had just ignored him.)
That same week I had someone point out to me that Richard Pryor had MS. I loved Richard Pryor and I knew he was sick but I had no idea he had MS. Being told that his illness was the same as what I had just been diagnosed with was not the most comforting thing to hear (especially considering my fear of not being able to move). People have a tendency to be thoughtless and there is a "willful ignorance" or complete lack of empathy that many people with no serious health problems have. On the other hand, some people think they are being helpful and that they are showing empathy. That isn't what is happening, however (statements like "everything happens for a reason", "just have faith", "I know just how you feel", etc. just make us (the people with the medical conditions) feel like we aren't understood and that we are being dismissed or, worse yet, blamed for our own medical problems.
Throughout my writing I am sure I will have many more “foot in mouth” stories to tell you. To this day I still get some very thoughtless comments (but since so much time has passed they don’t hurt as much as they used to though they do someimtes make me angry and/or upset). I’ll never understand why people feel the need to blame patients for their medical problems. I know in some cases there is a lack of empathy and/or a fear that what we are going through could happen to them. However, the thoughtlessness behind their unwillingness to even try to empathize with and/or learn about our health issues is unbelievable to me.
I currently live in a building for elderly and disabled people and someone in my building saw me recently and told me I looked tired. I said I was and she said “wow – if you’re this tired now you’ll never live to see 60!” I explained I had MS and “complete fatigue disability” but that didn’t change her mind; she just repeated her rude statement. It made me very angry but I just walked away. People like this are poison and they aren’t worth our time in my opinion. You can only teach people who are willing to learn, unfortunately. Bear in mind, however, that even people who are willing to learn things aren’t necessarily willing to learn about us. At a job interview for a Massachusetts University I disclosed about my illness and was then asked how long it would be before I was “completely useless”. I really wish I had known then that I could have sued the idiot who asked me that (the idiot, by the way, was an MIT Professor! Definitely someone who should have known better.)
Speaking of intellectuals with little to no empathy, this can also go the other way. There are some who are a little too “kind” to us and who treat us like invalids. It goes both ways. I saw a doctor at one of the Massachusetts hospitals (I’m leaving out names since I would prefer not to be sued) who refused to operate on my ankle when he found out I had MS. He got emotional on me, told me his grandmother had MS and then he said “MS is pain” (NOT true for all people with MS!) and told me I should go on Oxycontin for the rest of my life. I’m glad I ignored him. I found another doctor and finally got the operation I was looking for. If I had taken the other doctor’s advice I’m sure I’d be in very bad shape today.
So in closing (for this section): it sucks and it’s really unfair that we have to advocate for ourselves so much. I am on a few support blogs and it never ceases to amaze me (the horrible things people in our shoes have to tolerate from their alleged friends, family members and or spouses/boyfriends/girlfriends). It’s an outrage and it’s a complete waste of our time and energy to have to tolerate these negative attitudes. However, it’s in our best interest to help each other out and to learn when we need to advocate for ourselves and to be pro-active about our health care.
One other thing I felt I needed to add to my "foot in mouth" section as an example of what I mean: I just remembered what my ex-boyfriend said to me soon after I got my diagnosis of MS. After a couple of weeks we went to a dance club that we used to go to weekly. We pulled into the parking lot and he turned to me and asked, "do you want to tell our friends or should I?" I stammered some response (don't remember exactly what it was) but I remember later telling him how upset that made me. I had finally started letting myself not think about the Diagnosis, and this was my first night since being diagnosed where I finally let myself go out to have a good time and he dropped that on me in the parking lot before we went in. I was very upset by this.
He also once told me that he understood because he had "a disease too". I had absolutely no idea what he meant and, when I told him this, he said "oh - I'm an alcoholic." Once again I didn't immediately tell him how this made me feel (I told him the day we had our "final breakup" meeting. He dragged the break-up out for four weeks. He finally came to me with an art-pad full of notes as to why I shouldn't leave him. I told him how angry it had made me when he had compared his being an alcoholic to me having Multiple Sclerosis. He then tried to blame my anger on him on the MS. I'll go into further details about people like us and relationships so I'm skimming here, but let's just say that there were far more issues behind the breakup other than what he was trying to pin it on. We definitely were on the road to a breakup with or without the diagnosis. After all, I should have felt I had someone to talk to when I was diagnosed but I certainly didn't feel that way about him.)
MS is different from person to person. I've heard it (the disease) compared to snowflakes. Please know that every MS patient is different. Please also know that, if you are healthy and you hear someone with MS saying they are tired/in pain/experiencing "brain fog" (or similar type complaints), you should NOT try to compare what they are feeling to yourself. I realize you may think you are being helpful but you probably aren't. Just hear them out and smile and nod politely if you can't think of anything to say. We don't need you to tell us that you feel the same as we do. We need you to at least try to understand what we are going through.
Foot in Mouth Poll
If you have any type of medical condition, have you also experienced negative feedback from others about your condition?
Back to Intro
- MS and Fibromyalgia
My "journey" with MS and Fibromyalgia is about going through the diagnosis process and living with both "invisible illnesses. I am writing this in the hopes of helping others avoid the pitfalls that I stumbled across.