One of the difficult things about my life situation as a chronically ill, disabled parent to a disabled child is that when it gets extra hard, I can’t tell people around me. When I feel scared about what’s going to happen to us, when I feel like giving up, when my health is getting worse and my partner is looking more and more worn out, I can’t tell my friends or family. I can’t ask for support from the groups I sometimes ask for support on other issues either. I have one friend I can tell but when other people ask how I’m doing I can’t tell them.
Because they will most likely start to try to solve my problems and I will drown with despair from all their advice.
Right now I’m so scared. I’m still in some kind of mode where I’m having serious sensory issues. I’m overloaded from next to nothing and can’t spend very much time with anybody, not even my child. It has been this severe since the Christmas holiday when I spent three weeks hanging out almost all of the time with child and partner. On top of that my ME is getting worse because I’ve been too physically and mentally active, or not been able to hold myself back as much as I need.
If I tell people about the sensory overload and repeating meltdowns they will say that I should get some extra help with my kid and try to rest or something else that I already know. Or, they won’t at all understand that it’s a problem and belittle my experience. If I tell people that coordinating all healthcare visits for my child is more than I can deal with they will tell me that I should ask somebody to help me with it. If I tell people that I’m really worried about my child’s health they will say that we should see a doctor for it.
I wish I could just do that. But the thing is, all of the “solutions” people offer me if I share a tiny little piece of the fear I feel right now – I’ve already thought of them. Many of them I’ve even tried or I’ve realized after doing extensive research that it’s not possible. Many of the solutions people give me would actually just make things worse. Every time people give me advice I didn’t ask for I feel desperate and sad in a way where it’s like that ground I’m standing on is falling apart underneath my feet. Because it makes me aware of that I’m on my own. There is nobody to help me. And that insight just makes the blood in my veins freeze and the darkness even darker.
I don’t want advice and I don’t want people who don’t understand my situation at all to start interpreting me. To be honest, I’m too tired to talk. Too tired to explain and certainly even too tired to participate in any kind of interaction. Because participating in a conversation requires a lot more than just rambling here. (That’s why I haven’t replied to your comments, I’m sorry about that.)
So I distance myself from people.
Therefore, I’m alone with my fear and anger right now. In a way it’s chosen, but it makes me sad anyway.
Update January 2017: A post on the same topic can be found here.
the uninspirational 
This really touched me. I ache for people going through tough times; my natural tendency is to try to “fix”, to try and make it better. But that approach isn’t quite as constructive as it looks. It can do more harm than good. And, in recent years, I’ve noticed that I, too, have various problems that I’ve tried everything to solve, and nothing works, but people ask about them anyway. They mean well, and I appreciate the thought, but I end up feeling worse than I would have if they hadn’t said anything. At first, I wondered why I felt that way, but then today, I read your post and realized that it’s because I feel invalidated! You hit the nail on the head: “do you think I haven’t already thought of and tried that?” is a perfect summation. So yep, I’ve realized that like you, I tend to say less. ❤️ Please know that you can reach out to me any time you want or need 💞
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Thank you for your kind words. I relate a lot to what you describe, my first impulse is very often to offer help to solve a problem too. Partly because I was raised with that as a norm, and partly because I care about other people and I truly want to help people in hard situations. I think my journey from not even knowing that I was disabled to being disabled as an identity, and also becoming chronically ill, has made me see this issue very differently. I’ve learned that just like me, a lot of disabled and/or chronically ill people fight so hard to make our lives work and very often we gain a lot of knowledge, and it’s important to many of us that people around us recognize this. This isn’t an easy issue, because sometimes we need advice and/or practical help. I guess I’m searching for a way to offer people help, and be offered help, without diminishing knowledge.
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[…] how I have a big problem with when people give me advice that I didn’t ask for (here and here) and I’ve written about how being comforted means risking to be erased, and that I’m […]
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