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I need feedback about explaining illness to others (specific incident)

Discussion in 'Lifestyle Management' started by Billy S, May 28, 2018.

  1. Billy S

    Billy S

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    I continue to try and figure out how I tell people about my illness, as most of us do I guess. But now I have a specific concern that I hope to get feedback on.

    When I became ill I had to stop performing. (I was a musical theatre actor.). But as the years went by I felt more and more like I was losing and missing a big part of who I am. So a year ago I started singing in a chorus. Rehearsals are obviously physically challenging and learning and memorizing all of the music is, of course, also a challenge with the brain fog, etc. Concerts are terribly challenging. Last concert (my 3rd) I finally asked for and got to use a stool during performance. Pretty much the only explanation I gave as to why I needed that is that I have a "chronic health issue" that impacts what I can and can't do.

    Each concert we have one or 2 songs that have some choreography. The last concert there was just one song that involved just a little "Choral-ography" and I was able to stand up from the stool and do it. Well this concert we are doing a number that has quite a bit of choralography. I am not going to be able to do it so I don't know what I am supposed to do during the #.

    I have asked to talk to someone at tomorrow night's rehearsal. I don't know if I should give more details (e.g. "I have a neuro-immune disorder" or "I have a condition called ME/CFS"), which I have no problem doing. Or should I just leave it at what I've already told them. I'm just wondering (and I guess I shouldn't care) if it sounds like I am being purposely evasive.

    Part of me just wants to say forget it and quit. I am really struggling physically and at this time I don't even know if I'll be strong enough to do it. And I am so tired of dealing with this issue of self disclosure. It would be easier just to stay at home and stop trying. But for today I won't do that.

    Any feedback would be greatly appreciated.
     
    Joh, AnnaDove, alkt and 5 others like this.
  2. Sushi

    Sushi Moderation Resource Albuquerque

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    I often use that one as it is accurate but confounds most people to the point that they don't ask anything more. If you say you have ME/CFS that can lead to complicated and often distressing discussion.
     
    AnnaDove, alkt, L'engle and 4 others like this.
  3. Diwi9

    Diwi9 Senior Member

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    As much as I want to be an advocate for ME/CFS, there is still the practical side of life where people just do not understand. Have you ever monitored your heart rate? If you have ME, you likely have orthostatic issues. Purchase a pulse oximeter and test it...supine to standing. You probably will not be lying if you tell someone that you have orthostatic issues.

    I am sorry you are in this situation. There used to be a lot I could do and that has narrowed considerably. This disease is erratic at times, at least for me. It seems impossible to explain to others until we have a grounded medical explanation. The social gain in pushing yourself for others will not help your health, only you will know when you are able to go a little further, because it is you who will pay the price. Being able to participate socially is a huge benefit to your life, so do whatever is necessary to protect it.
     
    Billy S, AnnaDove, Sushi and 6 others like this.
  4. lafarfelue

    lafarfelue Senior Member

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    With my work and having ME/CFS and POTS, I sometimes just tell people that I have issues with my heart... because, well... tachycardia is a kind of heart thing, right? ;) And heart issues can cause fatigue and breathlessness etc. Obviously not in the same way as ME/CFS, but at least it gives people a sense of what I experience without them dismissing me (or having any distressing discussion like Sushi mentioned), and perhaps they even show some empathy for my situation.

    It sounds like your choir time is good for your mental health (outside of figuring out this kind of frustration that is). I would say, broach it with them, to see if you can be incorporated into the number in a way that caters to your illness. They should really be considerate of those around them who are differently abled. If worse comes to worst, you may need to sit it out... but hopefully they'll take your abilities into consideration.

    Wishing the best outcome for you! :hug:
     
    manasi12, AnnaDove, Sushi and 3 others like this.
  5. hinterland

    hinterland

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    Hi! Yes, I see your issue. I think this is called ‘disclosure dilemma’. What and how much to say. I find that most people, who don’t have this disease, only want to hear a two sentence explanation about what it is.

    If it is a passerby, who you’re never going to see again, I think it is ok to say ‘I have a medical condition that means I get exhausted easily’. But if you’re going to be seeing these people on a regular basis that sort of answer will start to appear evasive, as you say. The danger then is that they’ll assume the worst, most unspeakable, disease they can imagine, whatever that might be, and treat you with suspicion.

    So, personally, I think it’s best just to say you have ME (and add that some people know it as CFS). Then give a quick explanation (borrowed from Jen Brea) that you’re like a battery that only charges 20 to 30%. Then, get them to imagine a scenario where they wake up in the morning and their iPhone only has 30% battery remaining to last the full day - you have to choose where and when to use it, avoid energy intensive applications, think about what activities to prioritise, etc.

     
    E.man, AnnaDove, Sushi and 3 others like this.
  6. NilaJones

    NilaJones Senior Member

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    I have EDS, so I usually say, 'I have a genetic disorder that affects my joints, my immune system, and my brain.'

    'Genetic' is the only part that people care about. I can see the change in their eyes when I say that word. It tells them that it's not contagious, and is not going to get better next week.

    Saying you have heart problems seems like it would have a similar effect, and be short and useful.

    There is definitely an issue of closeting here. Like everything in the disability rights arena, the problem is that people only have so much energy and cannot always be expending it on activism :(.
     
    AnnaDove, Sushi, alkt and 1 other person like this.
  7. NilaJones

    NilaJones Senior Member

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    I think people are afraid to ask, but they like to have some kind of a label.

    As for how much you should push yourself physically, I don't know an answer to that. I certainly understand that you need to take care of your soul, as well as your body, and that sometimes it is worth it to use up some spoons to feel like your real self again.
     
    Billy S, AnnaDove, Sushi and 3 others like this.
  8. Billy S

    Billy S

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    Thank you everyone for the things you have to say. Going to digest what you have to say and then respond to each post separately. However I wanted to make clear 2 things.

    1) The chorus is completely willing to be accommodating to me and others who have physical limitations.

    2) The "choral-ography" (as opposed to choreography) involves standing in one place, not moving around the stage.
     
    Joh, NilaJones, AnnaDove and 3 others like this.
  9. Billy S

    Billy S

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    Thanks again everyone. It feels good being able to share with people who get it. And get your support.

    I ended up sending an email and then met with someone that night. As I expected, they were very accommodating and said whatever I need to do is fine. I was pretty certain that would be the case, but I think the reason I posted my question was to get some feedback as to how people disclose.

    Here is the email I sent:

    "I love being a part of the chorus. But It challenges me because of my illness, and I am still figuring out how much detail to share with people about my medical condition. I tend to say less as it is easier than trying to explain the details. At the same time I do not want to seem evasive. It feels important to me to share with you what is going on, being that my limitations affect my participation (or lack of participation) in the chorus.

    I have a neuroimmune disorder. Basically, my immune system is stuck in overdrive as if it's trying to fight off a nasty virus and it drains a lot of my body's resources. My nervous system is also hypersensitive and over-reacts to all kinds of things; all of which result in a reduction of my physical and cognitive functioning. I really struggle with the symptoms of my illness. I want you to know because it is not going to be possible for me to do the full choralography, standing up, for THIS IS ME. Physical exertion can be extremely difficult for me in the moment and, if I push myself, debilitating in the future. I’m wondering if I should exit the stage for this number? What do you think is best?

    I need to spend a great deal of time alone at home resting, and singing with the chorus brings me joy and truly gives my life meaning. But, as you can see, it is also very challenging and I need to take care of myself along the way.

    I thought it would be easier for me to let you know what is going on before talking tonight about possible solutions for THIS IS ME and any future physical challenges that might arise."
     
    Sidny, RebeccaRe, ElmAve and 4 others like this.
  10. ElmAve

    ElmAve

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    It's always uncomfortable when someone thinks you should have to explain yourself. A couple of times I have just said, "If I walk or stand up too long I will collapse." No label, but easy to understand why I need help.
     
    Mel9 likes this.

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