Not knowing & guilt

I enjoy watching programmes that make a difference to people who need help having their homes adapted to fit their conditions and for whatever reason can’t do this for themselves. The programme also helps those who come into a diagnosis late, who struggle to be able to help themselves and help with adapting their homes to accommodate their symptoms.

Why I’m bringing this up is that no matter how late the diagnosis, there is still an element of guilt on our part that we have to live with, particularly as those we share our lives with must also come to terms with our condition, but primarily must come to terms with the symptoms that accompany our condition.

Where I do struggle to function normally in my life, my family will struggle also. There isn’t a day go by that I don’t feel guilty because I didn’t know what was wrong with me and now 8 years on since my diagnosis I’m still working through some of my symptoms. It’s not only me who has to deal with that.

How we get to deal with our symptoms may not tie in with the how the other person we share our life with might have seen their own life panning out. That’s a big ask. I needed to know so that my disability was out in the open at that time. It’s important others are given a choice. I feel bad that didn’t happen.

I am lucky that my brain damage as a baby was related only to a trauma during my birth. That my injury was self-contained. I am thankful for that. This isn’t something I have passed on to my children.

Sadly, others aren’t always so lucky that way, particularly if what they have is hereditary.


8 Sep, 2017

6 thoughts on “Not knowing & guilt

  1. Yes so true. I feel guilty for my girls not ever having the ‘fun’ mom, go out and spend hours playing on the weekends then have the energy to do housework, homework, etc. and get up before the sun rises and do it all over again to go to work the next day.

    I feel like they’ve missed out too much. My father in law and husband installing a ramp at our home, so I wouldn’t have to climb the stairs, taking time away from other things, they’d rather do or need to do.

    It affects the whole family and it’s so hard not to feel guilty. Walking through a store and they all have to slow down, so I can keep up. If we spend too much time in one section of a store, because someone wants to browse for a while, I have to find a bench and sit.

    They’d enjoy, if I participated more in shopping but I can’t physically handle standing and walking for that long. It just doesn’t work for me. And it isn’t fair to them.

    I find myself apologizing and thanking them too much and I get lectured for it and told to stop apologizing and ‘you already said thank you twice.’

    1. Thanks Bonnie. I can absolutely resonate with you. Walking around stores is also difficult for me too. I also have to find somewhere to sit after a while.

      I would get cross at the fact that my family forgot they were walking with me, because they were walking their normal pace and forget they needed to think about my pace, not theirs. I’d have to continually remind them not to walk so fast and pull them back.

      On our part, it’s easy for us to feel guilty or feel like we’re a burden and I have that sometimes too, but I know those who care, won’t want us to feel like that. Children tend to go through phases with their parents anyway, but if the right disciplines are in place by you over what you deal with, I believe your children will come back in later, even if you didn’t have that now.

      Just be you. You come first with what you deal with. Your family need to fall into line. You are their mom. If the shoe were on the other foot, they would want you to fall into line with them. And you would. It’s the importance of family.

  2. You can only feel guilty for something you say or do. Those are your responsibilities, no more and no less.

    An accident of birth in your case, or unknown genetic condition do not need apologising for; the need for an understanding on the part of those with whom you spend time, and if they get that wrong that’s not your guilt to own either.

    1. Thank you. I think it’s not knowing, the having to work it through from scratch has brought about the guilt and expecting others to conform to what we know now.

      I’m working on the letting go of guilt.

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