What do you say when people ask "How are you doing?". I'm not the type who typically says "Fine" but it's tempting much of the time. There are some days when several people in a row ask me and it's very difficult to figure out what to say. Since January, I have had major back surgery and have another two planned and I was diagnosed with lupus and have very very low iron levels suddenly so I am tired and sore AND I am working full time and going through a divorce. I try to be optimistic when I talk to people but, honestly, it gets difficult. Anyone have suggestions?
Hi Lynn,
You've done a good discussion here mate and alot of member's will contribute with how we deal with other's....before i new i had Lupus and other's asked how i was with my epilepsy/strokes etc...i always said i'm fine and that was the end of the story because otherwise my mom did the updating well on her own concerning how i was and felt...then when i found out i had Lupus and my skin was going mad etc which people could see mainly neighbours, for some reason or another i used to express what was going on but not no more...my actual answer is i fine and life goes on point blank because those people i spoke to started getting ignorant and was saying well i feel bad and there's my mind ticking over and thinking you've just asked me a question and it was pointless.
The only ones i discuss issues with now are all my family of LWL besides my hubby.
"OUT SIDERS TO NOT UNDERSTAND"
Love Terri xxx
Generally speaking how are you doing is a basic greeting and most people really don't want a blow by blow history of your ailments. My response is I am doing OK - and you? Reports of how I really feel are reserved for close friends who actually want to know- its really not a topic for casual acquaintances and rarely seen neighbors and is certainly not for general office fodder
Poobie, I understand your point but what I was referring to are people at my work. I'm a college professor so these people are my coworkers for life basically since most of us stay at our jobs once we get tenure. They all know that I was out for months and that I had major surgery also and I really am not doing ok so I might say something like "I've been better. How about you?" but I wouldn't say fine if I wasn't - especially to people that I see every day. Does that make sense?
poobie said:
Generally speaking how are you doing is a basic greeting and most people really don't want a blow by blow history of your ailments. My response is I am doing OK - and you? Reports of how I really feel are reserved for close friends who actually want to know- its really not a topic for casual acquaintances and rarely seen neighbors and is certainly not for general office fodder
Hi Lynn
I only have a few close friends at work, that I actually tell how I'm doing. And even with the ones that know I'm sick I'll usually just say 'hanging in there, and you?" Because they don't really want to know every day. I understand what you're saying Lynn, you don't want to say you're great, when you're not, but some people really only want to hear "fine". And this is part of the 'new normal' for us. Every day involves some level of pain or discomfort for us. Sometimes even our families don't want to hear all that we feel, because they know they can't do anything to make us better. This is a good discussion, thanks for starting this : )
Trisha
Lynn: Try being honest but optimistic simply say, I'm hanging in there, or its day by day, or if they are spiritual ask them to keep you in their prayers. Most people that you work with are most likely concerned and care how you feel and have witnessed your struggles. Find those few that you trust that you can lean on for support during these difficult times. You might be surprised about the people who really do care.
Fortunately, I have met many academics who would like to talk about the weather, their families, etc. but I work in a community college so most of us don't do research. I guess if it was "just" lupus, it would be much harder to explain but I had surgery and have more planned so some of the people are asking how I am recovering from the surgery (5 vertebrae fused among other things) and they really expect me to be completely better now (6 months later) - the doctor says more likely it will be about a year becuase of how extensive it was. I think also the superficiality of one's response is related to how in-depth the conversation is. I almost always say "Fine" or "Getting by" or something vague when I am passing people in the hall. I really don't even know what part of all that I have is lupus and what is not as I am new to this diagnosis. On an optimistic note, I asked the pain management specialist to try something new and it seems to be a much more effective choice. Phew!
Ann A. said:
Dear LynnMath,
I spent most of my adult life as a university professor. The university at which I was employed for the last 30 years has more than 30,000 students and 10,000 employees. The last time that I checked there were approximately 2,000 full time faculty members and an additional army of collaterals and adjuncts. I worked with people on both the academic campus and the medical center/school campus. I was jointly appointed in two departments and taught classes that were crosslisted with two others. People were constantly asking, "how are you doing.'
Somewhere along about yearr 10, I realized that even the people in my department did not really want to know. The concept of lupus was lost on the vast majority of them. When I talked about my autoimmune illnesses their eyes would glaze over with boredom. They did not really have an interest in understanding a chronic debilitating disease. So, when lupus was the issue, I learned to reply to most people with, "fine and you?"
The people to whom I felt closer, especially if they had given indications that they understood might get a longer explanation. One day I was complaining about my lupus fatigue and pain and a woman that I considered to be friend looked at me and said, "Well, I survived breast cancer, but you don't hear me complaining about it all of the time." I knew then my colleague and coauthor just did not get it, so I have not spoken to her about it since then. She doesn't talk about her health issues and I don't talk about mine. We talk about other things. Interestingly enough her partner is one of the people who does get it and when she asks me how I am doing, I tell her the truth. And she reciprocates. To me that is important. I share information with the people who share information with me. We actually go out to dinner. My colleague does not talk about health or about anything that is bothering her while her partner and I chatter away about all sorts of personal things, including our health issues.
The other members of the faculty did understand "surgery." So immediately after surgeries, I would respond with an answer related to that aspect of my life. "I am recovering from my knee replacement surgery at the expected rate." "I am healing well, thank you! How are you."
I was dx with lupus when I was 21 years old. I am now 66. I truly do not believe in expending large amouts of energy explaining myself to people. When many of my university colleagues asked how I was doing, they just wanted to know how my health was impacting my job. So, I sometimes gave them the information they were really seeking. They would say, "Hey Ann, how are you?" And my response depended on the who they were and the nature of our work relationship.
"All of my classes are full and going well. How are your classes going?"
"I am working on that NIH grant application and expect to have it in on time. How is your grant writing going?"
"I have finished my first run through the data but I need to clean it. There are some outliers that need to be removed. How is your data analysis going?
"I have finished the first draft of my paper for the national meetings? What will you be presenting?
I just got the galleys of my new book/journal article so I am trying to get them back to my editor in time to meet her deadline. How is your book coming?
In my entire life I have never met an academic who would prefer to talk about my health over their on work.
Thanks for all the additional information. I am so new to the diagnosis of lupus that I really don't know all that well what it is or what it does. I do know about the connections to arthritis because my osteoarthritis was "like someone 20 or 30 years older" and that's why I got tested for autoimmune conditions. I think I may not have been clear in what I said - I don't explain lupus or any other particular ailment when people ask how I'm doing but I do try to let them know that I am dealing with a lot still (they tend to think the divorce is a huge issue but it actually makes me happy that soon I will not have to deal with extra people that should take care of themselves). I guess I worry about this whole issue of what to say because it is ongoing and complex (I had laminectomies and fusions and a few other things done to my back) and takes a great deal of my energy and time. When I told my dean that I had surgery planned in December, he said "You don't look like you're doing badly to me". Argh.
Anyway, I'm just trying to figure out how to deal with what to say long term to people that DO care about the answer sometimes. To me, fine means fine and sometimes I do say something like "Going back to work full time is really hard on me but I'll get through it" or something similar. I don't actually tell anyone at work (or really many other places) very many details. I guess I am mostly trying to figure out how to be honest but not give too much information but still let people that it does affect (such as people in my department) know that I need to deal with this.
And Anne A., sounds like we have some things in common so if you'd like to take this offlist or to the chat room, just let me know.
P.S. I really need to learn a lot more about lupus but I have no intention of teaching those around me about it unless they start feeding me misinformation. The reason I said "just lupus" was because I think that if I tell people "Oh, I'm not doing too well. I have lupus" (which I don't really say), they would not know any more about it than I do. You should hear the back advice I got (and 10 years ago, the laryngitis advice I got). LOL Everyone's an expert.
Ann A. said:
Dear LynnMath,
As I deal with the disintegration of the bones in my spinal column and anticipate the future surgeries, I have a great deal of empathy with your situation. Please stay in touch and let me know how your rehabilitation is going as you go through the additional surgeries. I will keep you in my prayers. I hope that your surgeries go well.
I am an educator. When people ask me a question my brain wants to give them an answer that is as complete and accurate as possible. But my 16 year old granddaughter has taught me an important concept. "TMI Grandma, TMI." So, I do put some effort into trying to make sure that I do not offer people too much information about my health conditions when they would be satisfied with a discussion of the weather or how their favorite football team played over the weekend. If they want to chat, I chat. If they want small talk, I am great at small talk. My health problems are just not suitable for small talk. My health problems require big talk.
In October 2011, I had a laminectomy (L3-L4 and L4-L5). Even though I am retired and no longer dealing with academics on a daily basis, I find that most people in my life expected a much quicker recovery than my neurosurgeon did. While a laminectomy is much less complicated than a fusion, the neurosurgeon said that the recovery period would be one year. It is time for me to call and make an appointment to see him.
Unfortunately I have recently irritated the nerve that exits the spine at L5 and the result is so much pain on the instep and big toe area of my foot that I am once again using a cane. I have seen my pain management/rehabilitation physician and he stands ready to provide a steroid injection. But I am going to take my Neurontin and cut back on my workout intensity and see if that works before I let him inject me. And I am going to see the neurosurgeon and get his take on it. He said that if the laminectomy did not work and the bones slipped, then he would do a fusion. So, I need to make sure that my explanation for the pain is correct.
I don't know anyone who would describe their health issues as "just lupus." People who have been diagnosed with lupus tend to have a wide array of other health conditions including spondylosis - from osteoarthritis, degenerative disk disease, facet syndrome, and spinal stenosis. I am convinced that the reason so many people with lupus have spondylosis is because we tend to be so deficient in vitamin D which is essential to calcium absorption. Long before the deficiency reaches a level where it starts to destroy the large bones it hits the small bones that make up the spinal column. The facets go first. People with lupus also tend to have other autoimmune issues - sometimes many of them. They often develop additional conditions as a result of the medications they must take, bone loss, eye problems, diabetes, etc. A diagnosis of lupus tends to become extremely complicated very quickly, it is seldom if ever, “just lupus.”
Since I have been living with lupus for 46 years, this is not my first experience with surgery and pre-surgical and post-surgical explanations. I have had three total knee replacements, the left knee in 1988, the right knee in 2001, and the left knee again in 2003. Explaining the 2003 knee replacement surgery requires the use of words like autoimmune reaction to particles or particle disease, periprosthetic osteolysis, and bone graft. I have also had kidney surgery, and eye surgery. I have even broken bones.
Now I have to come up with an explanation for why the year since my back surgery is over and I am limping and using a cane again. I have definitely come to realize that most people do not understand the anatomy of the spine and the nervous system and their eyes glaze over when I slip into the terminology. There are people at my church who are praying for my leg to be healed. The persnickety part of my personality wants to tell them that they are praying for the wrong part of my anatomy. But I know that would be rude. I have decided that when the people that I encounter outside of my home ask me about the limp and the cane they are going to hear two words - arthritis and weather.
Not having to spend too much time explaining pain is one of the benefits of living with lupus long enough to grow old. I wish you the best of luck in dealing with lupus, the back surgeries, and work. Please stay in touch and let me know how the surgeries and the recuperation are going. You cannot give me TMI and I understand the terminology needed to explain the procedures.
Respectfully Yours
Ann A.