Hey guys and dolls! I haven't been around much for a few weeks, there's just been too much going on. I will take a look at the boards to see what's going on as soon as I finish posting this. I hope everybody is okay.
Anyway, here is my issue: An elder in my congregation is going to interview me this week. I'm going to be sharing details about this disease, and how it affects me, and how it affects my ministry. I will have to go up onstage with my full leg brace and a walker. I've done this kind of thing before, but never in this much detail. The point of the interview is to encourage people not to give up.
The audience consists of roughly 150 people that I know and love. At every meeting, I have at least a dozen people coming to me. They ask how they can help. They express sorrow. They tell me that I'm an inspiration. They use an "I'm so sorry for you" tone of voice. The thing is, I know these people are loving and genuine, but it's very hard to keep hearing. It's definitely a character defect in me. I have too much pride. I just want to interact with them in the way I did before my disease became visible... I DO want to be used in whatever capacity will be most beneficial, but the aftereffects (weeks of increased pity) are very, very hard for me to process.
I know that I am not the only one here who has dealt with this. What helps you to process all of the (well-intentioned) sympathy and pity?
Thanks, I have to do this on Thursday night.
I just let people know I have a good life and am very grateful for so many things. I tend to also use humor to lighten things up. I do not get much pity even with Cancer. Mostly people are amazed at my attitude no matter what.
I too have a hard time dealing with pity, as well as admiration for how "strong" and "positive" I am and how I'm dealing with this sooooo much better than they ever could, and how I never seem to ask "why me." It's annoying. Depending on the particular comments, and who's delivering them, I may use humour, as Alex does. Usually I'm just matter of fact. I might point out that everyone has something in their life to deal with and MS just happens to be mine. I might say there are lots of worse things I could have. I might point out that "why me" is the most pointless question anyone could ask. I might say that just because I'm not balled up in the fetal position in a corner, crying and feeling sorry for myself, doesnt make me any stronger than anyone else. I'm the same person I always was. Happy, sad, friendly, bitchy, energized, tired, productive, lazy, crabby, rtc. Like before MS, and like everyone else, some days are better than others. To quote Joy Behar, "So what? Who cares?" lol
Why not address this head on by incorporating your thoughts about this issue within your talk? Tell your audience that you find pity hard to seal with, and why. That you appreciate the genuine concern behind it, but you don't care for how it makes you feel. If the purpose of the talk is to raise awareness about what it's like to be 'disabled', let them know that one of the downsides is having people pity you because of it.
Tammy, DV beat me to the suggestion. Work this 'I don't want your pity, but I do value your friendship' into your talk with the minister. Otherwise, I would say the other option is to turn down the request to do this public testimony again. You should be able to be honest with your pastor about the uncomfortable side effects from speaking publicly. There is no reason why you should put yourself through this if the end result causes you such discomfort. It is ok to say no - even in church.
Yes, Lu is right. It's okay to say "no" in church, but I like dv1's idea.
Your point in speaking to these people is not to seek pity, obviously, or even to generate sympathy for others with disabilities. It is to combat the idea that people with disabilities are different than others in the core of who they are, their humanity, their spirit.
Those to whom you are preparing to speak whose thoughts toward you include pity need to hear you say that you want something else. You want to be treated like you, like they treat each other, like they treat others with needs of any or every kind. They don't realize the harm that they are causing by thinking of you (and me, and ... whoever) as disabled persons. We're simply persons with different challenges than theirs.
Let them see that you are perfectly capable of carrying out whatever ministry God gives to you, by His grace. Remember: He doesn't call the equipped; He equips those whom He chooses to call.
Thank you for your suggestions. I am going to try to point out that no one with a disability wants pity, or even to be viewed as some sort of hero for having one! No doubt, MS isn't easy to live with... But I think there are worse things to have to live with. For instance, I know a woman who is verbally abused by her husband every time she attends a congregation meeting. There are scores of people who have no idea what has happened to their children! Every time someone tells me that I am inspiring them in some way, it makes me feel like a complete fraud, because I am just trying to live my life-same as they are!!!
In spite of what I just said, I am feeling a bit better about this interview. Who knows, maybe it will help someone, but if I can- I am going to try to help them by trying to help others to view us differently. Wish me luck.
I'm sure your brothers & sisters in the congregation mean well. That's obvious. I'm not for sure how to approach it though. I can see one of the elders is using you to inspire others at one of your Thurs congregation meetings. And to show that it may be difficult for you to go around talking about your ministry to others, but you still persevere.
Maybe you can change the subject when they start talking to you about it when you're socializing before/after the meetings? That will get them off topic, perhaps. Just smile and start talking about something else. It might work.... :-)
I've received very little in the way of pity, knock on wood. People, including family, ask me about my symptoms or what having MS is like, so I try to describe things as briefly as I can. It's then that I get the sympathetic words and soothing pats.
At that point I break in and say that what I go through is so much less than what many others endure, and that I'm so fortunate in that regard. This is the complete truth, really, so it's easy to say. A quick change of subject at this point always works for me.
I understand, too. I always go into my: "Well, I decided long ago that being hateful and angry only pushes people away. So, I do my best to not be hateful and angry" speech to let folks know that it is not always easy, but better than going into hermit mode.
My problem right now is that I have begun walking after 2 years in a wheelchair. Everyone in my church has shown excitement and support unless I have a really bad couple of days, and decide it is best to use my wheelchair that Sunday. The looks I get, and the pep talks people feel they need to give make me want to scream.
Tammy, go for it if you feel comfortable with the idea. Consider this your personal forum and training class for those who mean well, but could do it better.
I'm pretty lucky because I can still hide my MS for the most part. I'm sure on my bad days when I am limping, people probably think that I'm faking because I wasn't limping the day before. I don't really know, and while I used to care, I don't anymore.
I did have some lady go on and on about what an inspiration I was and it made me extremely uncomfortable. I had a decent flare a couple of years ago that noticeably effected the function of my left side and my ability to walk, but after lots of physical therapy and steroids and other meds, I'm fine now. I didn't get what all of that was all about. I didn't save a kitten from a tree, or land a plane on the Hudson river. I just said "um...thank you." It was weird.
I don't like to tell people that I have MS, because i just want to be Amy and not the chick with MS. Most of my family doesn't even know that I have it, including my dad and my siblings. I feel bad about keeping it from them, but why do they need to know? I'm fine.
I wish that I had better advice for you. I did kind of like Lulu's advice. If you decide to go ahead with this speech/interview, perhaps you can try to take charge of the interview (even though the interviewer may want to) Perhaps you can say something like, "I'm not doing this for sympathy, I am just doing this to raise awareness for MS. I may use a walker, but everyone needs help with something. Some people need a hearing aid or glasses, or a step stool because they are too short to reach the top shelf. I happen to need a leg brace and a walker, but I'm just trying to live my life day to day, just like all of you. I am me (or insert name). That is my identity. MS may be part of me, but it's not my identity."
I've been over the part (in practice), and there are four questions I will be answering. I think it's going to be okay. The first two questions cover symptoms, and and how I deal with discouragement. The last two questions end the interview on a positive note. I'll let you know how
Here's the promised update: The interview went very well. Lots of people came up to me afterwards to ask more questions. The important thing is that they came away encouraged. Everybody is struggling with something... I suspect that I would prefer my challenges to some of theirs.
Thanks for being so willing to share yourself Tammy - in your church as well as with us. This is a hard topic. I don't want to be viewed as different but sometimes find myself getting upset if those around me don't see how much I could use some help. I'm the hard to please variety I guess :)
Earlier tonight I posted about a research survey that is asking PwMS to evaluate (in part) how they perceive the approach of their employers, friends, family and others has changed since they've been diagnosed.
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