When Being Supported Makes You Feel Like a Burden

I remember the first time I properly cried because of my back pain. It wasn’t because the pain was unbearable. I cried because I was struggling to help my grandmother.

My grandmother has advanced dementia. Before she moved into a care home, she lived with us and I helped look after her. She needed quite a lot of physical support, especially when getting up from sitting or standing. Back then, my back pain was already getting worse, but when I was helping her, I couldn’t really think about my own body. I just had to make sure I didn’t let go because she might fall.

I remember helping her after a shower one day and then having to lie down on the sofa because my back hurt so much that I couldn’t get back up.

That was when I cried. Not because I couldn’t cope with the pain, but because I was struggling to help someone I loved so much.

My grandmother and I have always had a very close relationship. Even as her dementia progressed and she became more dependent on other people, I still wanted to be there for her when she needed me. I wanted to be someone she could rely on.

That moment stayed with me. It made me realise how much my health was getting in the way of something that mattered so much to me. It wasn’t just about being in pain. I was struggling to be there for someone I loved.

I’ve Always Been Independent

That feeling hit me so hard because independence has always been such a big part of who I am.

I have three siblings, including an older sister who is disabled and needs quite a lot of support with her daily life. Growing up in a family where I saw people I loved needing help, I think I naturally became quite independent without really thinking about it. I always tried to sort things out myself so my parents had one less thing to worry about.

So when chronic pain started making ordinary things difficult, it affected me in ways I didn’t expect. Sometimes it hits me when I’m struggling with something as simple as bending down to pick something up. I’m used to being able to get things done without having to think about whether my body can handle it. 

And now I have to think about it.

I Know How Lucky I Am to Have Support

My family has always been incredibly supportive. They check in on me, offer to help and never make me feel like I am asking for too much. I know how lucky I am to have people who love me like this but sometimes I still feel lonely, and I feel guilty even saying that.

I think part of that loneliness comes from knowing that, no matter how much my family loves me, they can’t fully know what it feels like to live in my body. They can see when I’m struggling, but they don’t experience all the thoughts that go through my head about what I can do today and what I might regret doing tomorrow.

They often tell me to ask for help, and sometimes they get frustrated when I try to do everything myself. I know they are only trying to help me.

They don’t see me as a burden. Nobody has ever made me feel like I am asking for too much.

But sometimes, I still feel like a burden.

So Why Is Asking for Help So Difficult?

This is probably the part I find hardest to explain, even to myself.

I appreciate the help. I know my family is happy to help me. I know they would rather I asked than struggled on my own.

But sometimes I still feel uneasy about asking.

I know it probably sounds simple from the outside. If someone is happy to help, why not just let them?

I honestly don’t know.

Maybe it is because I’ve always been independent. Maybe I don’t like feeling that my health is affecting the people around me. Maybe I don’t want to admit that there are things I can’t do in the same way anymore.

Nobody has made me feel guilty about needing help. The guilt comes from me.

I don’t have an answer for why I feel this way. I just know that I do.

Sometimes I Still Want to Prove I Can Do It Myself

I think there is still a part of me that wants to prove that I can do things myself. Especially when I’m having a better day.

If I wake up feeling okay, I want to make the most of it. I might do more than I normally would because, in that moment, I feel like I can. Then sometimes I realise afterwards that I’ve done too much.

That’s one of the frustrating things about living with chronic pain. My mind can feel ready to do something, but my body might not be.

I don’t always know which one to listen to.

I Don’t Always Know Where the Line Is

I think this is one of the hardest things I’m still trying to figure out.

With axial spondyloarthritis, I can feel like I can manage my day today, only to find that the next day I struggle to get out of bed. I want to do as much as I can without aggravating my condition, but I don’t always know where that line is.

Am I doing too much, or am I being too cautious?

Should I rest, or could I have done this myself?

Am I protecting myself, or am I holding myself back?

If I keep saying no to things, am I letting my condition control my life?

At the same time, I know that staying in the same position for too long can make my joints stiff, so sometimes resting isn’t as simple as just doing nothing.

There are days when I probably do too much and days when I probably don’t do enough. Sometimes I only realise I’ve crossed the line when it’s already too late.

I’ve written more about how recurring pain changed the way I approach everyday life in How Recurring Pain Changed My Everyday Life.

Learning That Accepting Help Doesn’t Mean Giving Up

I haven’t suddenly become comfortable with asking for help. I still find it difficult.

But I am starting to understand that accepting help doesn’t necessarily mean I can’t do something.

Sometimes it just means I don’t have to do every part of it myself.

I can still hang my clothes out, but someone can carry the laundry basket outside for me so that I can do the part I want to do. It sounds like such a small thing, but it means I can still do something for myself without using all my energy getting there.

I’m beginning to realise that I don’t always have to choose between doing everything myself and not doing it at all.

Sometimes I can accept a little help and still be involved.

I’m still learning how to accept that.

Maybe I Can Be Both

I don’t think I will ever stop wanting to be independent.

I still want to work, travel, help my family and do things for myself. I don’t want to spend my life constantly thinking about what my condition might stop me from doing.

But maybe being independent doesn’t have to mean doing everything alone.

I still sometimes feel guilty when I need someone to help me. I still don’t completely understand where that feeling comes from, and I don’t think it will suddenly disappear.

But I’m learning that asking for help doesn’t make me any less independent.

I can ask for help when I need it and still do the things I can.

I can let someone carry the laundry basket and still hang the clothes myself.

I can accept help without feeling like I’ve given everything up.

I think I’m still figuring out what that balance looks like for me.

And I think that’s okay.

Lots of love,

Ling