If I were to make suggestions to those who have faced or are facing such difficulties in their lives, I would probably appear to be unappreciative of their situations. So I will decline.

Grace to you,
Darrin

What would you say to Carla and the folks referenced in my post as far as being appreciative of people caring, yet being weighed down by them?

And I will be praying for you.

I've been dealing with multiple sclerosis for 5 or 6 years, but since the signs of this disease in the early stages are often not very visible to others, I think that many of my acquaintences forget that I have it, which is OK with me, except that I do appreciate prayers and encouragement.

I let folks know early on, and so does my wife, and I am very open to talk about my condition.
There are some folks at my church who fairly regularly ask me how I'm doing, and that has never really bothered me. I probably annoy them more when I give my standard answer – “much better than I deserve.” But I do sometimes give a bit more detail, whether that particular day/week has been good or bad. With MS, your status can change dramatically from one day to the next. So I don't mind educating interested folks a little on the disease (it's still fairly mysterious), and I am blessed to know that some of my brothers and sisters in Christ care about me enough to ask. Also, since most people know little about the disease, they're not likely to give me advice.

That which encourages me the most is such as came from a church brother the other day. I only speak with him on occasion, but he came up to me, asked me how I was, and let me know that he prays for me every day. That, combined with my observation of his serious walk of faith, was a great blessing to me.

The things that were a bit troubling to me came mostly early, not always from believers (but sometimes did), when I would first let them know of my disease. Then they seemed to feel an obligation to share some heart-breaking story of the demise of someone they knew who had it. Though I realized they should know better, I just listened and nodded, as they told me about the guy with MS whose family left him and he's in a wheelchair (but a really nice guy), or the lady who could only move her neck when the nurse came to wash her, or the uncle who had already quit his job early in life because he just couldn't manage working anymore.

I didn't get angry, although my wife did when I told her. I figure the people really don't know what to say and feel awkward at the news, so they may tend to quickly spout off anything they can think of related to the topic. I would just advise them to think before they speak. Their stories didn't make me worry more about myself – none of them surprised me and I know that God controls every circumstance, but I was rather dismayed at their insensitivity. My concern was more for them, not me. I had a young friend who died of cancer, and she had expressed some of the same concerns about the morbid tales people would tell her.

Again, my condition hasn't yet worsened nearly as much as it might, so I might get more impatient later down the road about being asked how I'm doing, but for now I'm just thankful that people care. There is plenty of isolationism to go around, where people just worry about their own problems and don't want to bridge the gap to others. I'd say pray, think, and then reach out in love. Don't worry too much about whether your words are perfect.

Sorry about the lengthy post. Perhaps something above is useful to someone.

Have any of you had any experiences like the above? Care to share how you dealt with the situation?

Yes I have. My first husband was diagnosed with terminal cancer, given 2 months to live and through God's providence and clinical trials, surgeries and more, he lived nearly five more years. During most of that time we became known as the cancer couple and no matter where we went or who we talked to we were always asked about the cancer. ALWAYS. I would be lying if I said it didn't quickly get on my nerves. While I understood that people genuinely cared, and while I certainly appreciated that, I became so tired of people ONLY asking about the cancer and nothing else. It felt like cancer was all anyone knew about us after a while and no one stopped to consider that maybe we needed a babysitter to go to the movies, or maybe one of the kids had an awesome solo at the Christmas concert at school. Real life stuff took a backseat in everyone else's minds and we were constantly reminded by others that he had terminal cancer. It became seriously depressing.

Dealing with that situation was not easy. I never wanted to be rude or come off as unappreciative because I knew people really did care. When the 15th person in a day (it happened, often) would ask how he was doing I began to just answer quickly and honestly (“he's having a really good day today” or “he's having a hard time right now, thank you for your concern”) and then I'd often just change the subject and ask them how they were doing, how their kids were, or tell them something else about our life such as how my garden was doing or something along those lines. Very seldom did I ever really say what I was thinking (“you're the 15th person today to ask me the same thing, I'm really tired of this question, can we talk about something else, please?”) but I did say it once in a while. As dismissive as it sounds, the folks I said it to really did understand and were glad to change the subject.

What is the best way to explain to people who care and question like above?

As they say, hindsight is 20/20. If I had to go through all that again, I'm sure I would respond differently now than I did then. To those who consistantly bring up an illness or injury I would be frank and upfront right away and tell them thank you for your concern, it is appreciated, but please do not ask me about that every time you see me. I would explain to them how painful and difficult it is to deal with every day, without the constant reminders from others. I would explain to them that the illness or injury does not suddenly define who I am or what my life is about, it's just a speedbump on the road to sanctification. I would make sure they knew that I'd love for someone to ask how the kids are doing, how vacation plans are coming along, or anything ELSE in my life that I'd much prefer to discuss over the illness or injury. I would remind them (as gently as possible) that life-as-usual didn't stop with the illness or injury and I still like to talk about sports, baking, the funny bumpersticker I saw a few days ago, or the countless other things that are interesting to talk about.

Thoughts in general on the whole situation?

In general, I would say that most people do understand it's a hard subject and do not even realize they're making it harder by the constant inquiries. In general, I think most people would WANT to know this, because they certainly don't want to make your life harder than it already is. I think it's better to be upfront and honest about this right away, than to ever get to the point like I did when I said to my pastor “if one more person comes up and tells me how strong I am, can I punch them in the nose?”. My pastor assured me this was a bad idea, so I took his advice. I just wanted people to stop seeing me as “the wife with the husband with cancer” and it was so frustrating that I didn't know how to communicate that to them. I was also “the wife with the husband who is an artist” and a landscaper, and a musician, and a great dad. Those things didn't stop but they did get lost in the minds of others when cancer entered the picture.

No question about it, it's not an easy situation to be in but I genuinely believe folks are understanding when you tell them how you honestly feel. Keeping in mind these are people that care enough about you to ask in the first place, so you've already got their ear on these things.

I hope this has helped in some way.

Thank you, sister!