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Breaking the News: When It

Breaking the News: When It’s Time to Tell People About Your Diagnosis

When I think back many years to the moment I was diagnosed, one of the many, many thoughts that jumped through my head, was, “How am I going to tell people? What will I tell them?” I was primarily concerned with my family and my close friends. People who knew I was sick and were extremely worried about me. The people I cared about on a day-to-day basis. How do you tell someone that you’ve just been diagnosed with an incurable and potentially debilitating disease? I’m not sure there is anything close to a correct or easy answer, but I thought I’d share my experience.

The call

It seems to surprise many people, but I got my official diagnosis over the phone. I’d had trouble with my legs being weak and then not working at all, which led to me being brought home from college, and even included a stay in a hospital while they tried to figure out what was wrong with me. I regained the use of my legs, saw more specialists, and then stayed at my parents’ place while I waited for test results and for someone to tell me what was going on with my body. Unlike many who get diagnosed, my family and I were actually pretty sure it was MS. We have a history of it in our family and I even grew up helping care from my grandfather, who lived with us because he was disabled from the disease. So we knew, but we didn’t have the official word. I was sure it was MS, and I think my family was sure, but obviously hoping for something else.

It was official

One day, the phone rang, 18 years later and I still remember answering it in my parent’s kitchen. They gave me the news we all expected, I have Multiple Sclerosis, it was official. I honestly didn’t think about the implications this would have on my life at that moment. I was more concerned about how I was going to hang up the phone and then turn around and tell my parents. My immediate fear was how they would handle it (that was really a mindset that would persist a lot for me in the early years with the disease). This was especially hard because they did know about the disease, they’d already witnessed some of the worst this illness could do. So I told them, hugged them both, there were tears, and then I reminded them that, well, it’s not cancer and at least it’s not AIDS (to which my mom briefly stopped crying and said, “wait, how would you get that?”). I did my best to assure them that things would be ok, that I was a fighter (often too much of one), and I would fight this too.

After that, I had some of my close friends come over, so I could tell them in person. It was again very hard because what they knew of MS, they knew from my disabled grandfather. Many of them worried how long it’d be before I was in a wheelchair. They were all amazing and encouraging, very upset, but extremely supportive. They were very helpful in informing other friends for me as well, something I am still very thankful for, because it’s tough to keep explaining something like that, not to mention, it’s emotionally draining.

That’s not everyone’s story

In some ways, I was lucky that my friends and family already knew a good bit about Multiple Sclerosis. For many people, that simply isn’t the case. Knowledge about the disease doesn’t seem to be very common. People seem to either think that you will be in a wheelchair soon, or, they’ll mention something like, they know their second aunt’s gardener’s grandmother has MS and they are fine (by the way, please never say something like that to someone who has a disease). Telling someone that you have a disease, when they know next to nothing about it, or worse, think they do, but don’t, is pretty difficult.

Emphasizing key elements about MS

I still meet many people that I have to try to explain the disease to and I find it difficult. I love to use the phone charger story that I used in this article. I also find that there is a need, especially with close friends and family, to emphasize a few key elements of the disease: it is incurable (no matter what you read, there is no cure), it is unpredictable (I can be fine one minute, terrible the next, I’ll cancel a lot of plans), and it is invisible (I may look fantastic, but I am a mess inside). Aside from how the disease works, I feel like those three elements have the most effect on my friends and family, so it’s important to emphasize those. For those that worry, I tell them, that while it may be difficult, this is a good time (if there is ever a good time) to be diagnosed, because there is some amazing research going on, and we already have a lot more effective medications than we did even ten years ago. I tell them that things will be OK, but I need their support. I then tell them I may send them some things to read and I’d really appreciate if they read them (that is literally how I found MultipleSclerosis.net, I was always sending people to links from here).

It’s hard for them to hear the news

It’s not easy to tell our family and friends, whether they have knowledge of the disease or not. I think it’s easy to forget how hard it is for them to hear the news that you’re delivering, so it’s important to be prepared for that. It’s also important to highlight a few key aspects of the disease and remind them that you’ll need their help and support, even if that only means reading a little bit about the disease. Perhaps most important, is for you to wait until you are ready to disclose, because telling people you have an incurable disease, is every bit as important to them as it is to you.

As always, please feel free to share your diagnosis stories in the comments, seeing other people’s experiences can be very beneficial to the newly diagnosed.

Thanks for reading!

Devin

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • emichael7390
    1 year ago

    Hi Devin,

    I haven’t been officially diagnosed with MS and will be seeing a specialist at UPenn next week, but I’ve been doing my research. Your articles have really been helpful for me – especially with easing the emotional aspect and the “Fear of the unknown”.

    I really had no symptoms of MS before the new year – other than having L’hermittes syndrome (which I brushed off as a pinched nerve) until on new years day I went to stand up and my legs weren’t working. I was in the hospital for 3 days and then 3 days at home with IV steroid infusions. Abnormalities in my spinal fluid, MRIs and ruling out all other suspects, MS was the only remaining. Since then it’s been a roller coaster and I think the hardest part has been the fear of having to tell my loved ones. My aunt was diagnosed about 25 years ago, so my dad has seen what it has done to his sister – naturally, the idea of his youngest daughter having these issues is tough. I think they are coming to accept and understand that though it is not an ideal diagnosis, there is always worse. And we are fighters 🙂

  • Debrahoff2
    1 year ago

    Thanks for yet another great article. Sharing my diagnosis has always been incredibly hard for me. It’s just not something I have ever been comfortable with, and I’m not sure why when I listen to others who seem to be more comfortable. Maybe it’s lack of confidence or a feeling of I don’t want to be unfairly judged, but I am finally, after living w this crap for over 10 years, feeling more comfortable w being more open about it. I just recently had to share my diagnosis w my boss at work which was hard but I am lucky to have a few close friends who I role played what I would say, which definitely helped me prepare for the discussion. I will say that the more I talk about it, the easier it gets and the more I learn to accept it. My company has been letting work from home until I can drive again. I am so grateful for this site, which I can now feel comfortable sharing my thoughts with people who totally understand what I am going through, which has also helped me w acceptance of the disease. It is hard for me to know when and how to explain things to my children, 7 and 9. I haven’t told them yet and I’m just not sure when the right time will be. I have made light of the big hospital visits because I don’t want them to worry about anything.

  • Devin Garlit moderator author
    1 year ago

    Thank you Debrahoff2! Sharing a diagnosis can be such a tough thing for so many people. Just coming to terms with a diagnosis on your own is hard, but then trying to explain it to others can be so incredibly daunting. Thanks for sharing some of your experience with regards to it, I feel that everyone’s story is important. Whether it’s easy or hard to share your diagnosis, I feel putting it out there for others to see is helpful, as is reading what others have done.

  • Julie
    1 year ago

    In the 18 years I have been dealing with this the one thing that has surprised me is those that have left (many I considered friends and my husband) and those that have stayed. Also making new friends thru an MS group I joined. They more than made up for the friends I lost. No explaining anything. They already knew.

    In my family no one has had MS. I looked as far back in both family trees that I was able. Nothing. I guess I drew the short straw. I told my department at work. I saw no need to tell anyone else. I guess they thought I was drunk, stumbling all up and down the halls. But there’s no law that says I have to report anything.

    When I started making huge mistakes I knew it was time to go. It was hard working a 10 hour day and then making huge mistakes, My doctor agreed, I was even approved for disability on my first try. I remember thinking I must really be screwed up if the government thought so.

    I now have no trouble telling anyone. Either you accept me as I am or not. It’s their problem, not mine. Is that the right attitude? I don’t know. It works for me. Everyone is different with how others find out about you. I only wish good health to all.

  • Devin Garlit moderator author
    1 year ago

    Thank you Julie, the disease certainly does do a number on friendships (https://multiplesclerosis.net/living-with-ms/ms-turns-friends-strangers-strangers-friends/). I thought the same thing when I was approved for disability on my first try, like, wow, I must be bad!

  • potter
    1 year ago

    At first I didn’t know how to tell people I had MS, when I finally did I got two different reactions. Most people said you look fine nothing is going to happen to you I am going to pray for you. Others would say something like I am sorry you are having to go through this and then treat me like a invalid even though I am standing right next to them. I guess I’d rather have someone say their sorry. Those people that say I look fine make my temper rise and I am a evenly tempered person. I realized that 99 percent of the people don’t know anything about MS. I tell everybody I can, I am now one of those annoying people in line. I will say something about being glad my shopping is done, I have MS and my legs have gone numb. (Usually it’s true) If they make a comment on how good I look, I say that is true but the problems caused by MS are all on the inside. I tell them as long as I am walking I am a happy camper. Potter

  • Devin Garlit moderator author
    1 year ago

    Thank you potter! I too would much rather have someone say they are sorry than to be dismissive of it. The battle against the invisibility of our symptoms seems never ending!

  • Pam
    1 year ago

    August 28, 2012 was my official diagnosis. I went to my neuro after going for 2 MRI’s and as he was pointing out the lesions in my brain, saying “don’t worry it’s not cancer” I was thinking duh, I know that, your an MS specialist. He was blunt, told me its a diagnosis not a prognosis. No tears, no freak out on my part, just shock. As I was on my way back to work, I gave the news over the phone to my parents and a very good friend who wanted to be at the doctors with me when I was diagnosed. Telling my two boys was the hardest, they were 10 and 14 so they didn’t really process it. My ex-husband was the one that freaked out the most out of all my family and friends.

    I’ve been lucky tho, they’ve all be super supportive. I’ve had some friends fall to the wayside because I cancel on them and their lives are different than mine, but I’ve made some new, really great friends. Dating…I’ve never seen men run so fast in the opposite direction as when I disclose the MS. It’s good tho, it weeds out the weak ones.

  • Devin Garlit moderator author
    1 year ago

    Thank you Pam! I’m sure telling your boys was extremely difficult! I 100% understand the dating issue, but like you said, it does help weed out the less than stellar candidates quickly!

  • jpford
    1 year ago

    That is a great article. Thank you.

    Outside of my immediate family, it took over ten years for me to let some of my closest friends and colleagues know that I had been diagnosed. I tested the waters a couple of the most e of times. Once with my college roommate (I pretty much never heard from him again) and once with a work colleague (never heard from him again either). I had to go, at my neurologists advice, to a psychologist who specialized in MS patients t learn I had to get over it to get on with life.

    I had been working for some large firms with absolutely incredible benefits and wonderful bosses. My fear of raising my hand to ask for assistance which might result in becoming an outcast in my own minute world was awful. In the end, I lost two of the most valuable mentors and friends because I felt like I could not trust enough to open up. Not to mention the lifelong benefits I gave up for me and my children.

    My advice to those recently diagnosed is to understand your diagnosis, take the time to discuss the implications with your spouse, understand your personal financial situation, and understand your health benefit situation. Then, play the “what if” game. Then, make the decision as to how to proceed with friends and employers. I wish I had followed this advice. My finances, stress levels, health and circle of friends might be much improved.

  • Devin Garlit moderator author
    1 year ago

    Thank you jpford! You’ve got great advice inremidning folks to understand their diagnosis. There’s a lot that goes along with it and really learning as much as you can and the possible ramifications is extremely important.

  • LuvMyDog
    1 year ago

    Sorry, but I honestly don’t understand what the big deal is about telling someone you have MS. Maybe it’s the way I was raised. Be honest, never lie, say what you mean, when you want to say it and mean what you say, don’t be a phony.
    I don’t think that it’s every bit important to others as it is to you when you get a diagnosis of anything that’s serious. I think the majority of people will be polite (phony) and act as if they really feel so terrible but I’m quite sure, in their own minds, they’re glad it’s not them.
    I took care of a few people over the years when I was younger actually up until I was about 50 or so. One woman in particular was so very sweet in front of strangers but showed her true colors to me after we had gotten to know each pretty well. We were sitting in front of her picture window one beautiful sunny day looking out at the lawn and flowers and the birds flitting back and forth around the bird feeders. A neighbor from the down the street was walking by on a leisurely stroll with her husband. The woman was wearing a cast up to her knee and was on crutches. My friend looked out and had a look of pure (??) sadness on her face and said, “Ooooh, that poor woman, she broke her leg last week, I feel so sorry for her.” I said, “Do you really feel all that sorry? Would you switch places with her if you could to ease her suffering?” With that, the sad face disappeared and she laughed and said, “No, not on your life, I’ll never feel that sorry for anyone!”
    I’ve experienced that same thing with a few friends and my few remaining relatives.
    The majority of the time I don’t “look” sick, therefore in their minds, I’m not, even though I told many years ago that I had been diagnosed with MS. No one, I don’t care who they are, can understand the pain, the depression, the anxiety, the sleepless, everything that goes along with MS……if…..you don’t suffer with it yourself! And I certainly don’t feel that people who are healthy are miserable and unhappy just because someone else has a health problem, unless of course they take care of them day in and day out.

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