I started this blog so that others going through autoimmune issues, with all of the weird symptoms and situations, would know that they aren’t alone in their frustration, anger, and fear.
I read other blogs by people with autoimmune conditions so that I remember that I’m not alone either.
Today I was reminded just how lonely it can be.
My grandmother has been dealing with pain for several years now, but it has recently gotten much worse and she is having difficulty walking. Using a walker was a difficult transition for her when she did it years ago. Now she’s facing using a wheelchair. She knows that once she begins using a wheelchair, she is unlikely to ever walk again. Sure, she may walk around the apartment, but beyond that, she’ll be dependent on the chair. It feels much more limiting than a walker ever did.
She is clearly scared and frustrated and mad and feeling isolated. I want so desperately to say “I know how you feel,” and “You aren’t alone.” I want to make her see that she can get through this. But the truth is, I have hated it when people have said similar things to me. That’s why I like blogs and Twitter: they’re passive. I take what I want and ignore the rest. And as much as I understand a lot of what she’s going through, I know that she really does feel alone in many ways, because no amount of understanding will make this anyone else’s situation but hers.
I also have to admit that I don’t truly understand. I know what it’s like to be in pain. I know what it’s like to need a wheelchair. But everyone’s pain is different. And my using wheelchairs has always been temporary. Plus, anything will be different at my age in my 30s than it will be at hers in her 90s. Still, I hope she allows me to provide support, but I know a lot about how this feels.
She is a strong woman and I admire her a lot. When she finally agrees to use a wheelchair as needed, I hope she can find peace in her decision. It is not an easy one. And while her situation may be unique to her, she knows that she has a very supportive family and that we will all do whatever we can to help.
So for the days that you feel alone, remember who your support network is. Talk to them, laugh with them, cry with them, and feel a bit less alone.
If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter so others know it’s not just them, that they’re not alone.