Talking About It

Before I found out I had multiple sclerosis, I told my family, my friends and my boss what was going on: the weak leg, the doctors, the MRI, the spinal tap. When I found out that the tests were positive, I pretty quickly told them that news as well. I was scared, but I was never alone with this.

I’ve learned since that some people take the opposite approach. They feel that they’re managing this disease well if they never have to tell a soul. And there are others who fall somewhere in between. MS is something to be mentioned only to those close people who really need to know.

To share, or not to share. I think of this as one of the defining issues in the way we each choose to live with this disease.

At first, it was hard for me to understand why anyone would choose to keep MS “a secret.” Wouldn’t there be fewer misconceptions about this disease if we all just talked about it? Wouldn’t it be less scary? Less confusing? Wouldn’t you want all the love and support that can be offered by friends and family who know what you’re going through? I don’t want to judge, but for a long time I struggled to to put myself in the shoes of those who keep silent. I just couldn’t picture that choice.

(Please, don’t send me scathing comments yet. Keep reading.)

Over time, I’ve come to understand that there are as many reasons not to share this information as there are to share it. Maybe your professional opportunities would be limited if your employer knew that there may be struggles to come. Maybe you’re avoiding worried looks or unwanted sympathy that you might face if you talked about it. (I wish neither of these things were true, but I know we don’t live in a perfect world.) Or maybe you just don’t want MS to be one of the things that defines you in the eyes of others. I get that now.

These days, when I meet new people, I find myself thinking about whether to share and how much and when. At first, it’s not really relevant information. It’s not like you’d walk up to a stranger and complain about your migraines or the bunions on your toes. Your health problems are your business.

But over time, as those acquaintances or professional contacts cross the line into friendship, not saying anything doesn’t feel quite right to me either. I have to go to the hospital for an infusion once a month. I don’t want to slip away mysteriously to do something that’s just a real and regular part of my life. I don’t have anything to hide. At the same time, “By the way, I have MS,” is a bit of a conversation stopper. You don’t want to put other people in the awkward position of not knowing how to respond.

I’m still working on the right formula for telling or not telling or who to tell or when to tell. I’m also really working hard at understanding why others make the choices that they do on this same issue. I wonder if you’d be willing to share your approach and your reasons for it. Do you talk about MS?

Tags Diagnosis      10 Appreciate this
| Reply
Katie

Katie Jennings, Blogger

Katie Jennings keeps busy juggling a son, a husband, a job, an old house, a bossy cat and unpredictable Vermont weather. She was diagnosed with progressive relapsing MS in December 2012. She blogs about all of it at http://steadyshegoes.com.

Leave a Comment

Thanks for sharing your thoughts with the MSconnection.org community. Please note comments are moderated.

    43 Comments

  • klaudie   Sep 2, 2014 4:57 PM
    the issue is some people are surrounded by people who have no biology knowledge sometimes I wonder but what ever
  • Avatar
    edster420  Sep 2, 2014 4:57 PM
    Rock on Lady! I hope to gain strength but I am ready to meet you ALL.
  • klaudie   Sep 2, 2014 4:58 PM
    the issue is some people are surrounded by people who have no biology knowledge sometimes I wonder but what ever
  • Avatar
    edster420  Sep 2, 2014 4:59 PM
    I send power to you. May we meet! 9172998037 edster@me.com
  • Avatar
    edster420  Sep 2, 2014 5:00 PM
    I send power to you. May we meet! 9172998037 edster@me.com
  • Jeni   Sep 2, 2014 5:03 PM
    The only people I have a problem with telling are friends my mother and I hang out with on a pretty regular basis, and those only because of one certain person. She's the type who a) thinks she's the world's fount of all knowledge, and b) absolutely knows someone who is dealing with whatever problem you have better than you are. I can't handle her at the best of times, I don't feel the need to put myself in that position. It's a real shame because the rest of the group are wonderful people, and people I could probably count on for help or even just an ear (or a shoulder). I just won't take the chance of her finding out second-hand, so nothing is said.
  • Cyndi   Sep 2, 2014 5:03 PM
    I have MS. The reason I don't talk about it is I told my employer about it when I was being tested for it...and it was also just after I had applied for a much needed and well deserved promotion. I was suddenly not of interest to the people in charge of filling the position. And I had to leave the job I was in because I couldn't physically do it any longer. I was warned by my doctor and fellow employees to "keep (my) mouth shut". I felt they should know, so that if I had days when I couldn't make it, they'd at least know why.

    It cost me the job I wanted. Both the disease and the decision to share the information.

    It's difficult. Most people don't even know what it is, and those who do often put it in the category of " mental illness" as opposed to what it actually is. I actually had more than one person tell me (and one doctor after one visit) that it wasn't a "real" disease.

    There needs to be more awareness of the reality we face as sufferers of MS.
  • Theresa   Sep 2, 2014 5:07 PM
    I admire anyone that discloses right away that they have MS. I was diagnosed with MS 22 years ago. Of course, my family knew right away. My kids were 6 and 2. My 6 year old suddenly wouldn't go to school unless I was with her. Her grandma had passed away a year before my diagnosis and she thought that because I was "sick" too that I would pass away too.

    Fast forward, I went many years with very little visible disability from this. Now I use a walker. I readily tell people (if asked) that I have MS. It really doesn't define me as a person, but now, does define some of the things I'm able to do.

    I think it is important for people to have some understanding of what is happening to us.
    Every day is an adventure!
  • Jolyn   Sep 2, 2014 5:09 PM
    I work in the medical field and I know my co-workers would totally understand, but I'm not hiding the info, I've told pertinent bosses, but I'm not openly sharing the info either. I've told a few close friends, but resist telling others, and I'm not sure why that is.
  • Jolyn   Sep 2, 2014 5:12 PM
    I work in the medical field and I know my co-workers would totally understand, but I'm not hiding the info, I've told pertinent bosses, but I'm not openly sharing the info either. I've told a few close friends, but resist telling others, and I'm not sure why that is.
  • Avatar
    murphylives  Sep 2, 2014 5:12 PM
    The worst mistake I have ever made was to disclose my diagnosis to my bosses at the hospital where I worked. I went from being treated like an assest to being treated as a liability.
  • Avatar
    marshina  Sep 2, 2014 5:14 PM
    When symptoms show themselves, talk. If not, stay quiet.
  • Roberto Martin Marquez   Sep 2, 2014 5:27 PM
    I didn't have insurance...I was stubborn...but I already had back problems but the leg weakness, the ants crawling on my feet and right arm, I knew were not related to my back. I was scared. At 53 years old, always healthy the day I woke up feeling miserable I felt like my life was over. Now diagnosed with Severe Spinal Stenosis, I await another diagnosis after a back and brain MRI. (I was too fearful of the neck MRI and am waiting in line for the rotating machine in another town) Some days, this former warrior is curled in a ball in pain...I take a lot of Neurontin and obtained a Medical Marijuana card....I've been living like this for two years now....with Medicare, I wait for a specialist to see me at the University of New Mexico MS Clinic...it take four to six months to be seen...this is my life. Your fine...trust me...God bless.(Google me)
  • Annessa   Sep 2, 2014 6:03 PM
    I don't hide it but it is not a conversation opener either. I am a massage therapist and everyone at my work, including several of my clients, know about me having MS because it does interfere once in a while but they are all very considerate about it. I will openly talk to anyone about it and have not received much negativity in it. I'm not embarrassed nor do I feel like it is a death sentence and that's where many of the people I know make a mistake. They get so scared of the disease that they end up feeling sorry for me or try to help run my life. Once they realize how I approach my life and working around having MS, it rarely even becomes a topic of conversation. I will say I am very lucky to have so much support in my personal and work life.
  • Annessa   Sep 2, 2014 6:03 PM
    I don't hide it but it is not a conversation opener either. I am a massage therapist and everyone at my work, including several of my clients, know about me having MS because it does interfere once in a while but they are all very considerate about it. I will openly talk to anyone about it and have not received much negativity in it. I'm not embarrassed nor do I feel like it is a death sentence and that's where many of the people I know make a mistake. They get so scared of the disease that they end up feeling sorry for me or try to help run my life. Once they realize how I approach my life and working around having MS, it rarely even becomes a topic of conversation. I will say I am very lucky to have so much support in my personal and work life.
  • Annessa   Sep 2, 2014 6:05 PM
    I don't hide it but it is not a conversation opener either. I am a massage therapist and everyone at my work, including several of my clients, know about me having MS because it does interfere once in a while but they are all very considerate about it. I will openly talk to anyone about it and have not received much negativity in it. I'm not embarrassed nor do I feel like it is a death sentence and that's where many of the people I know make a mistake. They get so scared of the disease that they end up feeling sorry for me or try to help run my life. Once they realize how I approach my life and working around having MS, it rarely even becomes a topic of conversation. I will say I am very lucky to have so much support in my personal and work life. Also being open about it has helped other friends or friends of friends who have recently been diagnosed and need someone to talk to, which I am happy to do. Someone with knowledge was there for me to help make it less scary and I try to pay it forward as best I can.
  • Annessa   Sep 2, 2014 6:05 PM
    I don't hide it but it is not a conversation opener either. I am a massage therapist and everyone at my work, including several of my clients, know about me having MS because it does interfere once in a while but they are all very considerate about it. I will openly talk to anyone about it and have not received much negativity in it. I'm not embarrassed nor do I feel like it is a death sentence and that's where many of the people I know make a mistake. They get so scared of the disease that they end up feeling sorry for me or try to help run my life. Once they realize how I approach my life and working around having MS, it rarely even becomes a topic of conversation. I will say I am very lucky to have so much support in my personal and work life. Also being open about it has helped other friends or friends of friends who have recently been diagnosed and need someone to talk to, which I am happy to do. Someone with knowledge was there for me to help make it less scary and I try to pay it forward as best I can.
  • John   Sep 2, 2014 6:34 PM
    2 things bother me. I told some people what I had, some act like they're sympathetic, but don't know much about MS. And some don't listen to the person who has it and want to tell them what is best for them to do!
  • pauline-14  Sep 2, 2014 6:39 PM
    I told my family and my workplace when I was diagnosed. I had to cut down my hours at work and within a year I was made redundant. This was because the company I was working for does not employ part timers. It took me 10 months to find another job thru word of mouth. I was in that role for 2.5years and now am unemployed again. This time because of the down turn in business. At lest I know its not because of the MS. However the job interviews I have been for since go really well until it gets to the Medical questions and then the whole interview changes and ends quickly. Sometimes I think maybe I shouldn't put on the medical form that I have MS. On the Brightside not working has enabled me to take up swimming which is certainly helping with my MS.
  • Ceci   Sep 2, 2014 6:47 PM
    I told the family, because they needed to know why all the invasive diagnostics. I waited a few years before I would talk about it with acquaintances, and these days, I wait for them to ask. But they ask more often, because I am more visibly struggling with things that used to be easy. I don't work outside the home, so discussions with my "employer" does not apply.
  • Charlotte   Sep 2, 2014 7:15 PM
    I only talk about it to those that are closest to me. I am not ashamed of it. I am not defeated. But I also do NOT want to be defined by my disease. I don't want people to treat me any differently because they think I need to be handled gently, simply because they do not know what to do with the fact that I have MS. If at some point it comes up, I talk about it. However, I dread the awkward "aawww, I'm sorry". It grates on me. I don't want anybody's pity. I know they don't mean it that way but still. I am strong. I am strong today. I will be strong tomorrow. I will be strong ten years from now, no matter what my circumstances may be. I have MS, but it doesn't have me.
  • Charlotte   Sep 2, 2014 7:15 PM
    I only talk about it to those that are closest to me. I am not ashamed of it. I am not defeated. But I also do NOT want to be defined by my disease. I don't want people to treat me any differently because they think I need to be handled gently, simply because they do not know what to do with the fact that I have MS. If at some point it comes up, I talk about it. However, I dread the awkward "aawww, I'm sorry". It grates on me. I don't want anybody's pity. I know they don't mean it that way but still. I am strong. I am strong today. I will be strong tomorrow. I will be strong ten years from now, no matter what my circumstances may be. I have MS, but it doesn't have me.
  • Jeff B   Sep 2, 2014 9:46 PM
    Katie, thank you for sharing with us your experiences. We've all fought through this with differing results. I was diagnosed in 1977 and told my boss (blank stare, DUH!), I told my friends (blank stare, DUH!), I told my family (blank stare, DUH!), I told my fiance (blank stare, DUH!). She is now my ex, never understanding I had a problem.

    In the thirty something years since then my close family has asked one question: "can I get it too?"

    I applaud you for you fantastic support group, I'm incredibly envious. But I live in the real world! I spent fifteen years in the corporate world and even though several in management "knew" of my diagnosis I did everything I could to minimize it's impact. I was able to climb the corporate ladder because no one realized what was happening and I NEVER made an issue of it.

    In the years since my divorce I've only told one woman of the diagnosis. The only time I did I got the usual "I'm your friend, you can count on me; but right now I need to, uh, wash my hair, rearrange my sock drawer", etc. This is reality!

    I've heard all the nice comments, the good 'advice', the warm and cozy explanations. But the real world isn't like that. Why do we keep selling this?

    My opinion is this: hide your diagnosis, your feelings, your fears, your hopes and dreams from the 'straight' world as long as you possibly can. They will run at the first chance they get. They don't want to know! Don't challenge them with your issues.

    ADA says that unless it limits your ability to DO your job you do not have to disclose your illness. Don't, unless you physically must! Until it becomes obvious don't tell anyone you don't have to. They will not understand, or most likely even care!

    Sorry. That's based on my bitter experience!
  • purlmarie  Sep 2, 2014 10:36 PM
    I do not disclose that I have MS because I work in the medical field, and they DO know what MS is all about. At this point MS does not hinder my working life. but as a physical therapist, it easily could. I also have family members who would not be able to talk about anything else if they were informed. My symptoms are "invisible" for now, so only my closest family & friends know about the MS. I'm not ashamed or embarrassed, I just don't want it to be the topic of conversation all the time or to be a reason to lose my job. So for now, I'm quiet about it. Maybe someday they all will know & that's OK too, someday...
  • purlmarie  Sep 2, 2014 10:37 PM
    I do not disclose that I have MS because I work in the medical field, and they DO know what MS is all about. At this point MS does not hinder my working life. but as a physical therapist, it easily could. I also have family members who would not be able to talk about anything else if they were informed. My symptoms are "invisible" for now, so only my closest family & friends know about the MS. I'm not ashamed or embarrassed, I just don't want it to be the topic of conversation all the time or to be a reason to lose my job. So for now, I'm quiet about it. Maybe someday they all will know & that's OK too, someday...
  • purlmarie  Sep 2, 2014 10:38 PM
    I do not disclose that I have MS because I work in the medical field, and they DO know what MS is all about. At this point MS does not hinder my working life. but as a physical therapist, it easily could. I also have family members who would not be able to talk about anything else if they were informed. My symptoms are "invisible" for now, so only my closest family & friends know about the MS. I'm not ashamed or embarrassed, I just don't want it to be the topic of conversation all the time or to be a reason to lose my job. So for now, I'm quiet about it. Maybe someday they all will know & that's OK too, someday...
  • Sara   Sep 2, 2014 10:40 PM
    I have only told my family and 2 close friends (my besties). I was diagnosed in 2009 and have kept it a secret from everyone else. I have a brilliant career working for a company I love, with a job I love. The opportunities I have been presented with over the last 4 years would NEVER have happened if they knew this diagnosis. I am incredibly fortunate that I have minimal symptoms and appear 100% healthy. I keep my fingers crossed that it will last as long as possible to enable me to enjoy life to the max - professionally and personally. I will certainly NOT be sharing my personal health situation with anyone else in the foreseeable future :-)
  • Sue Edwards   Sep 3, 2014 12:03 AM
    Like you I see pro's and con's in disclosure. Another variable you don't mention is your assessment of how any children might react and cope. When my husband was in hospital and diagnosed with MS I asked our two children - 8 and 6 - if they would like me to explain why their dad was in hospital. They looked at each other and the 8 year old said "We don't want to know." I said that's fine but if you change your mind just ask. They never did. In that situation you have to be very careful about who knows what as the diagnosis once in the open can become a subject of conversation and can be revealed to them by others.
  • Shirley Magli   Sep 3, 2014 7:46 AM
    Hi I'm 44yrs old. I was just diagnosed w progressive relapsing MS on June 6th of this year but was also diagnosed w adrenal insuffiency on May 29th of this year. I've been so sick for so long n now in finally know why. My mother, brother, grandmother n my aunt all had muscular dystrophy anothe auto immune disease. Now I've got MS. I'm really struggling to cope n take care of myself. My memory is gone. I can't seem to find my way out of a paper bag lol. I'm the only one I know who needs gps to get home. I also lost my problem solving skills. I'm so emotional n cry all the time. I'm not the woman I used to be. Now I'm try ing to get to know the new me. I raised to beautiful daughters all on my own. I never needed help. Now I'm needing help n it's hard to adjust to that. I'm losing my independence n not liking it lol
  • Avatar
    refusetoquit  Sep 3, 2014 8:41 AM
    Love this topic............just yesterday I had the thought, 'it's been 16yrs with MS and 3yrs since I was done working, and only NOW have the dissability my family immediately put on me'. Ten yrs ago, I was explaining the flowers I planted, and mom says, oh Kathy, HOW can you DO that? My comment, 'I dug a hole and plopped it in'. I had to distance myself from family to feel 'normal'. That wasn't hard because being self employed kept me working 6 days a week. I had a Salon.........couldn't be fired and was open with my MS with customers as they sheepishly asked questions. MANY customers who knew someone with MS said they wished those family or friends could be more talk-a-tive or acknowledge that they themselves have MS. They wanted to tell them how they should feel.STOP IT, I would say, the last thing they need is to be 'SHOULD ON'.

    Weather it's a stubbed toe, a broken arm or MS, it's an experience we all approach different. I've forgiven my family, the nosey customer I spoke about the weather, the sincere, and I had many, got the works. Sharing got ME through and the public learned MS isn't a death sentence.

    A site like this is where being honest with yourself is safe.
  • Gloria Harris   Sep 3, 2014 6:43 PM
    Only the people close to me know I have M S ,I see no reason telling everyone, I am coping well at the moment and live for the day !!!!We are all different and must find our own '' happy place'' mine is ''singing''' and I will continue for as long as I can !
  • Gloria Harris   Sep 3, 2014 6:43 PM
    Only the people close to me know I have M S ,I see no reason telling everyone, I am coping well at the moment and live for the day !!!!We are all different and must find our own '' happy place'' mine is ''singing''' and I will continue for as long as I can !
  • kristanleah  Sep 4, 2014 5:24 AM
    Most of my problems are invisible: cognitive problems, fatigue, severe anxiety because of the cognitive problems (I went from being very intelligent to dumb as a rock quickly because of lesions in my brain) so I don't tell many people because "I look fine" and so they do not get it. It is easier to play the part of the clumsy, ditz and lazy, unorganized person. It is easier that way. My coworkers know and are accepting - I work for a church so it is a pretty merciful workplace. My closest friends know and others are starting to, but I just feel like I'm making excuses for what people see as clumsiness or disorganization or just plain stupidity when I tell them about the disease. If people can't see it, they don't understand or really believe it.
  • kristanleah  Sep 4, 2014 5:24 AM
    Most of my problems are invisible: cognitive problems, fatigue, severe anxiety because of the cognitive problems (I went from being very intelligent to dumb as a rock quickly because of lesions in my brain) so I don't tell many people because "I look fine" and so they do not get it. It is easier to play the part of the clumsy, ditz and lazy, unorganized person. It is easier that way. My coworkers know and are accepting - I work for a church so it is a pretty merciful workplace. My closest friends know and others are starting to, but I just feel like I'm making excuses for what people see as clumsiness or disorganization or just plain stupidity when I tell them about the disease. If people can't see it, they don't understand or really believe it.
  • Avatar
    Sarahspeer  Sep 4, 2014 5:16 PM
    I liked your blog. Before I even knew that I had MS, I worked as a counselor in private practice. I had one client's husband accuse me of being on drugs. I worked for many years feeling weak and fatigued and people noticed it. Once I got the diagnosis the symptoms hit me hard and my gait was affected. So for me, working in a public setting I told clients that I had MS and coworkers that I had MS because otherwise they accused me of being on drugs.

    Like you, I did not want people to treat me differently but I am sure that some of them did. The hardest part for me almost 10 years after my diagnosis is that I still run into people when I am out on my scooter and they are shocked. When people ask questions about what it is like to have MS I appreciate it. I don't want anyone to feel sorry for me. One of my closest friends told me years ago that I "still had the same heart " and I try to always be aware of it but like you it is still a struggle at times in everyway.
  • Lavynia   Sep 5, 2014 5:37 PM
    I started having all the symptoms about 5 years ago and by that time I had only 1 positive brain MRI. I did not know what MS was and the Neurologist was saying to me "there is nothing, probably Migraine, you have to learn how to live with it.
    Last year was the harder one for me. I got worse and finally another Neurologyst told me that I had MS. After a few weeks I started accepting what I have, talking to my sisters and brothers at my church and feeling a huge peace and joy in my heart. I was talking to them about it with a huge smile (not a fake one) and that helps me a lot. The people around me start treating me the same as they were doing. Nobody tray me different because my MS. When I had my relapses I started making jokes about it and they were laughing with me. I think that for me, talking about MS in a positive way helps me to keep fighting but with a smile in my face and joy in my heart.Sometimes I get mad when things fell from my hands or when I get clumsy but it last maybe 1 minute or less. This is my story about telling others about what I have in a positive way.
  • Avatar
    chandrawilson34  Sep 6, 2014 11:04 PM
    Because of my weak leg symptoms, memory issues I went on a medical leave from my job and once I learned I had it I did inform my job however I took 6 months off trying to get my MS under control, because I waited a very long time before I took my symptoms serious. After 6 months I decided to give up the job and go on disability, I am always so fatigue I would of rather spent the little bit of energy with my girls...
  • cynthiajane  Aug 9, 2015 11:36 PM
    Thank you Katie. For me, you've hit the nail on the head! So hard and awkward to talk about it yet why the heck not?! Most people don't want to talk to me about it because I think they get stressed out. I can pull off the normal game...so they forget I have it. I never forget...unfortunately not even for a minute. I was only diagnosed a few months ago but knew something was wrong for many years prior. Honestly, I think we should all share that we have it and try, to the best of our abilities, to create a new world for people with this struggle. We are stronger than anyone could ever comprehend...it just takes more unity and less people trying to hide that they have this.
  • Avatar
    LadyQ_0  Dec 31, 2015 4:29 AM
    I haven't said anything about the tests and struggles to many just two Co worker friends and of course my rock, my husband. I've thought about telling my boss worth all the appointments but want to wait for clarification. But I don't want it to be an after effect of poor performance because then I feel I'm just using it as an excuse and not a legitimate reason.
  • Avatar
    mlbarto  Feb 28, 2016 1:36 PM
    I so appreciate this article because I struggle with this question. Often I feel like telling others would encourage them to learn more about MS and the more they know, the more support that's out there.

    On the other hand, I worry that I'll be pitied. It's tough enough not to pity myself so having others know this personal thing about you feels really exposed.

    When diagnosed I told my boss and right hand "wo"man at work. Gradually I told a few more people at the office but that was mainly because I have several staff members reporting to me and felt it was unfair and could unnecessarily impact morale if there was suspicion of me randomly taking sick days etc. I am fortunate to have a really supportive department culture.

    My immediate family knows but not aunts , uncles, etc. mostly because they are older and I don't want them to worry.

    You can see I still struggle with this. I do get heckled/questioned all the time about my diet. Why don't you eat gluten, dairy, or legumes? Why do you care about inflammatory foods? Oh cmon you can cheat. Oh cmon you don't need to lose weight. I just sort of smile and say it's just what I do. This is my diet and I like it.

    I think I'll eventually tell more people because I find some therapy out of helping people understand what I'm and others are going through. It can also help with fundraising. My husband did the MS150 last year and raised over $5,000. That is without a lot of people knowing. He works in healthcare so I feel like if i "came out" about this it would benefit others just in the fundraising.
  • Avatar
    mlbarto  Feb 28, 2016 1:36 PM
    I so appreciate this article because I struggle with this question. Often I feel like telling others would encourage them to learn more about MS and the more they know, the more support that's out there.

    On the other hand, I worry that I'll be pitied. It's tough enough not to pity myself so having others know this personal thing about you feels really exposed.

    When diagnosed I told my boss and right hand "wo"man at work. Gradually I told a few more people at the office but that was mainly because I have several staff members reporting to me and felt it was unfair and could unnecessarily impact morale if there was suspicion of me randomly taking sick days etc. I am fortunate to have a really supportive department culture.

    My immediate family knows but not aunts , uncles, etc. mostly because they are older and I don't want them to worry.

    You can see I still struggle with this. I do get heckled/questioned all the time about my diet. Why don't you eat gluten, dairy, or legumes? Why do you care about inflammatory foods? Oh cmon you can cheat. Oh cmon you don't need to lose weight. I just sort of smile and say it's just what I do. This is my diet and I like it.

    I think I'll eventually tell more people because I find some therapy out of helping people understand what I'm and others are going through. It can also help with fundraising. My husband did the MS150 last year and raised over $5,000. That is without a lot of people knowing. He works in healthcare so I feel like if i "came out" about this it would benefit others just in the fundraising.
  • klg-123  Feb 28, 2016 4:21 PM
    I was diagnosed in July 2015 after 1 episode of blurred vision (6th nerve palsy). It only lasted 2 weeks, so no one knew. Many tests later and the shocking diagnosis of CIS (RRMS). I am on Tecfidera and I have not had any symptoms since. The only people that know are my husband, sisters, mom and 3 close friends. They all ask how I'm doing, but are not invasive. I find myself reassuring them that I am "fine" . I know I have their support, but I have always been the strong one and the one to take care of everyone else. I haven't told the rest of my family - I won't tell my father and extended family because they will most likely "accidentally" put it on Facebook. I don't want my illness (or any other part of my life) on Facebook! I also don't want them to pity me or make it about them and whatever ailment they have. I haven't told anyone at work, either. I am a high school teacher. I can't risk having colleagues, parents and students thinking I can't do my job. The administration in our building can't keep a secret and there is high turnover too. I don't think there would be a lot of support there. So, for now, no symptoms means no disclosure. I also think a small part of me feels like as long as there are no symptoms, I am not really "ill"... I know I am - I take meds, go to doctors appointments, etc., but I think there is still a small part of me that says as long as I feel fine, I am fine... I want to keep my life as is until I can't. One day at a time, I keep telling myself. Its a process...
  • Avatar
    CowboysnAngels  Feb 29, 2016 6:24 PM
    If I had to do over again, I would never have told my employer or my friends (or family). I thought the same thing, I could educate them to understand my RRMS...WRONG!
    No matter how nice your boss is, he has a bottom line, yes with health insurance costs. I was in the hospital twice, got a few nasty emails and was "layed off" when I got out. I was up for promotion too, and had excellent performance reviews.
    My (so called) friends dropped off. My family can't be bothered, and change the subject. In a perfect world, we could educate people all by ourselves, to understand our plight, but we can't.
    My husband is my rock and the love of my life, he's all I need.
    I had to retire a few years ago and go on Disability. Not so much for the MS but for my lung disease. They didn't like me hauling oxygen around. Oh they can't say that legally, but they find a way to get around it. Michigan is a no fault state for employment.
    So in conclusion, if I could do it all over again, no one would know any of my health issues.