Me and Dizzy have been thinking about people recently. In particular, the dilemma of whether to tell people, or not to tell people when you’re diagnosed with a chronic condition.

dizzy-on-bed

I kept my MS a secret from most people until very recently. I think the main reasons for me was the worry of being judged. Of people seeing me differently, not as capable, able or reliable anymore. There was also the dealing with people’s reactions. I still don’t understand why people feel the need to always go ‘I knew someone with MS…’ and then either ‘they’re in a wheelchair’ or even better, ‘they’re dead now’. That’s always just great to hear… It’s also easier not to say anything and just to carry on as though everything’s normal. Because it’s not just the worrying about how people will react it’s the also telling part. When is a good time to come out with this sort of thing? Team meetings, over lunch? ‘Yes my week has been quite eventful actually, been diagnosed with MS’. I’m just not sure.

Thinking about it recently though has made me realise a large part of it comes down to trust. Trusting people not to see you differently or change their opinion of you. I had to tell most people about my MS before Christmas due to a relapse and it’s actually turned out to be a really positive aspect that’s come out of it.

These are the amazing things I have learnt from being more open with people:

  1. More support. If people don’t know, they can’t help or support you and I’ve found out most people are more than happy too. Just having someone there to listen or offer to help with some of your work can make all the difference.

dizzy-with-dragon

2. Can be yourself and not hide how you feel.  I didn’t realise till I told people, especially at work, how exhausting it is lying and pretending you’re always feeling fine. In my mind I was always hoping I was looking like this from the outside:

dizzy-work

When sometimes, really I would be feeling like this:

dizzy-working

Now people know it’s so much easier to just be able to say that my MS is playing up and if I look half dead at my desk they understand.

3. People are more accepting and open with you. If you’re honest with people about what’s going on they are generally more honest with you. I’ve found out so much more about people I know since telling them about my MS.

4. Being more accepting of yourself. Being honest with people has made me more accepting of me! I’ve realised hiding my MS from people was also helping me hide it from myself, which wasn’t very healthy. It’s really helped me mentally have a shift towards coming to terms with it.

5. Knowing who your friends are. Because if they’ll stick by you being ill most of the time, they’ll stick by you through most things. 🙂

dizzy-and-friends

So this is one of my big and positive lessons with MS! I know not everyone receives positive reactions from people but I just wanted to share how it can be a really positive decision. It’s important to remember not to assume how people will react and that most people will be pretty amazing about it. 🙂 xx

 

Also published on ‘The Mighty’ HERE 🙂

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70 Replies to “Lessons with MS: Telling people”

  2. I remember when I was diagnosed with colorectal cancer and I decided to tell people that many of them went on to tell me they had known someone with colorectal cancer and ….well…they were dead now. Great! After about five of these I would say I had cancer and then say :” and don’t tell me you know someone who had it and died because I will NOT listen”. Anyway, this is a good post with practical ideas for anyone with chronic illness.

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    1. For some reason people do love sharing those stories. Not great when you’re trying to be positive! The last person that started one I just cut off, I think they realised after that. That was brave of you to tell people. xx

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  3. Great post! I think realising that my friends were there for me – MS or not – was a big deal. I still struggle with being accepting of myself, like you, I have an accepting manager, plus a PA at work to help me when I’m having a bad day.
    Really positive post!

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    1. It’s a really important thing to know about the people around you. It’s definitely made me start to fully accept the MS aswell, as before if I could hide it from others I could also in a way hide it from myself. It also makes a big difference having people offer to help when it’s a bad day. Glad you liked the post. 🙂 xx

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  4. I’m so glad you started opening up about the MS. People, generally, are a lot more kind and understanding than we expect. And letting them know really will benefit you because you won’t have to worry that they think you’re being lazy!
    I found, since I started walking again, it’s better to tell people I have a spinal cord injury. The wheelchair was a giveaway but now I know people may not understand that I’m worn our or in terrible pain unless they know.

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  5. Excellent article. I have a friend (old flame, actually) who has MS and recently had a flareup. She has been totally open about it, including on Face Book, and the loving and respectful support she received was great. She is a nurse and also sees teaching about such conditions as a professional duty. Thank you for this.

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    1. That’s amazing for your friend. People really do have so much support for you when they know! I still haven’t been brave enough to share on facebook though. :/ Hope you’re friends doing ok after her flareup. xx

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    1. Thank you Tina! They definitely are, I hope most people turned out to be those kind of friends for you. I’ve only ever had one or two that we’ve lost contact just because they didn’t know how to react. xx

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        1. It must have been awful at that time but it’s true. If they don’t hang around when something like that happens they’re not true friends. In the long run that’s a good thing to know and means the ones that stuck around are amazing friends to have! 🙂 xx

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  8. Sharing your story is a great way to educate people on an illness that isn’t always so ‘visible’. I have FIVE female cousins with MS, from their late 30s to early 50s. Three of them have had to use wheelchairs in the past, but none of them do right now.

    In my immediate family, my mom has scleroderma, a sister has lupus, two other sisters and I have osteoarthritis and ALL of us have fibromyalgia. We all look healthy enough…until you see us walk or try to stand from a sitting position. We have good days and bad days, and many don’t understand just how bad the bad days can be.

    When I get the opportunity to explain invisible illnesses, I never pass it up. Good luck to you! 🙂

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    1. Thank you so much Felicia and for sharing. I hope you’re all coping ok as that is a lot to deal with. Does it help having family members that you can share experience with and who know what you’re going through?
      I hope you’re having a good day today! 🙂 xx

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      1. It does help mentally, emotionally…and medically. by keeping each other updated on our health and what has or hasn’t worked, we’re able to be more proactive in lifestyle choices and when dealing with healthcare professionals. 😀

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  9. Brilliant post! I was diagnosed when I was a teenager and didn’t tell ANYONE except for a couple of close friends. When symptoms started creeping in properly I had no choice but to tell people and actually most reactions have been really positive. I don’t think I’m ever going to get there with acceptance but fingers crossed everything will be a bit easier over time 😊👍

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    1. That’s what I did, even though I was abit older than you when I was diagnosed. I was really worried about it too, ended up getting in a right state and crying at work when I told them but they’ve all been amazing. I’m really glad they do know now.
      Hopefully we’ll get there with the acceptance thing one day! xx

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  10. I told everybody right away. But they had been concerned about me, with undiagnosed symptoms for quite a while. So it began to make a lot of sense. And I’ve only had great responses. But I know others haven’t.

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    1. That’s brilliant that everyone’s been so supportive! It’s a really hard time when you’re ill but don’t have any diagnosis to explain it. Luckily where I worked at that time were really patient about it. Hopefully over time everyone will just have the good experiences of telling people. xx

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  13. No matter how crappy this “fantastical” disease can be, there ARE always lessons to be learned.

    I love when you said
    “hiding my MS from people was also helping me hide it from myself, which wasn’t very healthy. It’s really helped me mentally have a shift towards coming to terms with it.” Think this is a very true statement for many. Although I really didn’t have a chance to make a decision about “coming out” (thanks to my EX:) I know that I would have been open from the get go – just because I couldn’t imagine NOT telling people (but that is just me:) Although I DO think I may have gone through a bit of a TMI phase. As in telling EVERYONE and ANYONE I encountered. (Pretty sure the guy at the register at the gas station did NOT need to know that I was just diagnosed with MS:)

    Thanks for the great read!:)

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    1. Really glad you enjoyed reading my post. 🙂
      Lol, that did make me laugh, I’m imagining you just getting there to pay and straight away you saying you have MS.:) I think it is far more healthier to be honest with people but I do understand it’s not that simple for some people. Even though you didn’t really get to make the decision it’s still brave of you to have been open about it from the start. xx

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  14. Yeah – hadn’t really thought about my TMI phase until responding to you. Now Shawn is laughing his ass off at me imaging the places I went and the people I told. He is SURE that at some point I also announced “and now I PEE my pants.”

    Thanks for the laugh:)

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  16. First off all, those are the most adorable little donkeys and where can I get them? Second, I am very proud of your strength to tell people. I think it helps to build bridges from one person to another. Thank you!

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    1. Dizzy is from the Donkey Sanctuary: https://www.thedonkeysanctuary.org.uk/ I love them, they’re knitted by volunteers (the patterns on the website if you’re feeling adventurous 🙂 ) and then they sell them in the shop and all the money goes to the donkeys!
      Thank you for your lovely comments too. I’ve definitely noticed people being much more open with me about things in their lives, it really does help to build bridges. xx

      Just had a look! I can’t find the knitting pattern now but here’s the link about them: https://www.thedonkeysanctuary.org.uk/register/woolley It says they sell them in their online shop but I can’t see them. :/ xx

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          5. Hey! Just received their email and ordered a Woolley from them. I guess they just send you one they choose, so we’ll see! Thanks for the info.☺️

          6. Yayyy! I’m glad they got back to you. Would love to see what your Woolley looks like when he arrives. 🙂 They are all different shapes and sizes, one of the things I love about them is there’s no two the same. 🙂 xx

  17. I had so many unanswered questions that I pretty much told everybody right off the bat. I received great support from my job, family and friends. My parents (who were in North Carolina and I was in Seattle at the time) immediately thought the worst. They thought that as soon as I got diagnosed I’d be in a wheelchair. When I visited them they saw that that was not true. And they understood when I said I was fine, that things may be going on in my body, but I was not going to let that rule my life.

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    1. I think a lot of people think the worst when you say MS. I had a lot of people look completely horrified when I told them, which never really made me feel better. I’m glad they’ve been so supportive, it makes such a difference. 🙂 xx

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  19. Hi DINOSAURSDONKEYSANDMS! <3
    You have such a courage to let others know about this and I am happy the response was better than expected. It does feel better to let other know about these things because people have the opportunity to support you. All the best my friend – keep strong although you don't need to because you are <3
    I hope this message makes you happy 😀
    I would like to notify you that I nominated you for a blogger award! 😀
    See my post here with your name on the nomination list; https://dwquotes.wordpress.com/2017/02/19/versatile-blogger-award/
    Congradulations – hope this comment made feel good!
    X
    Doni

    Reply

    1. I’m glad you liked the post and thank you for your lovely comments. The helping with acceptance has been massive. It’s tough at the moment having to fully accept it but I know in the long run it will be so worth it. xx

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  24. I had a mixed bag response when telling people, sadly at the time my workplace was less than supportive… Kept changing my roles without asking if that was what was needed and then was completely discriminatory towards me, accused me of putting outside activities before my work life and said I shouldn’t be going to the gym in case it provokes another relapse. A couple of meetings later (where I took unison) and things settled. I’m now doing a role I love and my boss doesn’t keep telling me about this miracle cure that’s been on tele!

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    1. I’m so sorry your experience at first wasn’t positive. That’s the last thing you need after being diagnosed. I’m really glad it’s worked out though and you now love your role. It’s good your boss doesn’t keep telling you about miracle cures off the telly too. That one drives me abit mad too. Thank you for stopping by and taking the time to comment. 🙂 xxx

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      1. It most certainly is. I posted on my Facebook ‘no new lesions’ after receiving my MRI results Saturday and well meaning friends sent private messages with stem cell information… Others assumed I was miraculously cured! Ah well, won’t make that mistake again! 😂

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          1. Yes it was definitely a long awaited surprise… My last one 18 months ago wasn’t so positive so taking this moment and celebrating! Fingers crossed your results are good too! Xx

Let us know your thoughts, they always make for a very happy Dizzy :)