Disappointing others with a lack of answers

“How are you feeling?”

“Is the new treatment working?”

“When do you think you’ll feel better?”

My guess is we’ve all heard at least one of these, or something like them. I’ve been hearing them more and more, and I’m getting increasingly frustrated at having to answer these questions. I appreciate that people care. And there’s nothing wrong with the questions. When I tell friends and family that I’m starting a new treatment, I think it’s great that they’re thinking of me and wanting to know how it’s going. The problem is the expectations behind the questions.

Let’s face it, “Is the new treatment working?” is really asking if I’m feeling better yet, because they want me to be better. I’m glad they want me to be better, but it’s not that simple. And how do I say that I feel 10% better but not 100% better? It’s so hard to explain that. “Health” people are used to getting sick, taking an antibiotic, and being well. They don’t understand decades of illness followed by medications that do nothing or very little. They don’t understand that when a treatment “works” it may not be a cure. It may not get rid of the problem. It may just improve things a bit.

Every time I get those questions I want to be able to tell the asker that I’m doing great, I’m feeling better, the treatment is working, I’ll be healthy any day now. But that’s just not how it works. That’s not how my life works. So I disappoint them with the truth. What else can I do?

13 Responses to Disappointing others with a lack of answers

  1. drunkitty2000 says:

    This is something we struggled with a lot in my house early on, and still do on my bad days. Early on I got tired of talking about how bad I felt and it was ingrained in my to just say “i’m fine”. Luckily, hubby knew better and finally started pushing me for real answers. I often felt like his questions regarding how I felt were a push for me to have answers, for me to have improved. I felt like his questions about what I’d done that day were his knocks at me for how little I’d done. The reality was I was putting all of that on myself and after a lot of struggle and a learning curve he learned better ways to ask the questions so that I’d actually respond with a real answer instead of just what I thought he wanted to hear.

    I still hate it when he asks what I did that day, it never feels like enough even on the good days and on the bad days I want to reply with something like “I got out of bed and I brushed my teeth” and sometimes that’s exactly how I do respond. I have to get over feeling guilty for not going to work every day. I work from home so even when I do work AT home I feel like I’m not working to his level because I know he feels a bit jealous that he doesn’t have my freedom. It helped a lot when he finally just admitted that that was the issue rather than making me feel bad for going to lunch or having coffee.with friends.

    • chronicrants says:

      It’s great your husband understands how to really communicate with you about your needs. It sounds like there’s something he still doesn’t understand, though. He’s jealous of your “freedom,” but he’s the one with freedom! You’re trapped in the limitations of your body, so your potential freedom will always be less than his potential freedom. He has the potential to find a way to work from home with a more flexible schedule, too. I’m not saying that’s easy or practical for everyone, but it’s an option. You don’t have the option of a 9-5 office job, I’m guessing. He’s probably never thought of it that way. I know a lot of people are jealous that I’m not working, but that’s only because they don’t understand the other things that I have to give up for the same reasons I can’t work. I think that’s part of the education we need to provide.

      • drunkitty2000 says:

        You have some good points there. I think generally it’s not a Fibro issue, just a difference in what we do. I’ve always been the entrepreneurial type. I’d have a hard time working a 9-5 for someone else even if my body allowed it. On the other hand, he does much better working in that situation. We each have our strengths and weaknesses.

        He has admitted lately that he is jealous of the freedom I have to just go work at Starbucks with some friends having coffee. Or the idea that because I’m self-employed I control my days off/ my vacation time/ etc. These are conversations we’d be having whether there was illness involved or not.

      • chronicrants says:

        That makes a lot of sense. That’s why when/if I’m able to work again, I’d like to work for myself and I’d like to aim for early retirement. I’ve been reading up on personal finance and making plans. Now I just need the income. I’ve always been a 9-5 person and I was always jealous of the people who weren’t. So I might as well try to be one of them/you, right?

  2. Reblogged this on Migraine Discussions and commented:
    A wonderful post capturing many of my own feelings!

  3. ignitetruth1 says:

    Great post. Some people have just stopped asking how i’m doing because i guess they think i’m just complaining or that I will never get better or just don’t want to.

    • chronicrants says:

      I’m sorry to hear that, Ignite. It can be hard to get people to understand that giving factual statements about our health, even when they’re negative, is certainly not the same thing as complaining!

  4. balaam says:

    When your answer is, “it will never get any better, this is as good as it gets.” What can you do? People just don’t realise that “Not getting any worse” is a very good thing to be celebrated.

    • chronicrants says:

      I think maybe you just answered your own question, Balaam. Maybe instead of saying, ‘It will never get any better” you should say, “Great news! It hasn’t gotten any worse!” That will encourage others because you’re putting a positive spin on it, and at the same time it will probably set better expectations for them. In fact, I may use that myself, if you don’t mind 😉

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