Asking for help is hard: chronic illness edition

Video version at the bottom of the page – coming soon!

A scraggy outcrop of rocks that meets a very lam, blue sea. Kat, a white woman wearing denim shorts, is scrambling across them, overdoing it instead of asking for help!
Classic Kat overdoing it all day!

Last night I was too sick to get out of bed. I had managed to put some pasta on to boil but had then gone straight back to bed. My housemate, rescuing the pasta from being overcooked, came into my room and offered to finish cooking my dinner for me. They had seen how sick I was. Without even giving myself time to think, I answered, “No, don’t worry, I’ve got it”. Even as I was saying it, I knew it wasn’t true, and I did need the help, but accepting help is hard and sometimes asking for help is even harder. And I am not very good at either.

A recent confrontation

Recently, my old group of uni friends and I rented a house in the Dutch countryside and hung out all together for the first time in years. I was very over-excited and over-exuberant about everything that week. One of the other members of the group also happens to have a variety of chronic illnesses, and what I noticed was that, throughout the week, she was very good at asking for help, and asking for her needs to be met. And in a way, I found that very confronting, because it showed me quite how little I ask for anything that I need, and how willing I am to sweep everything under the rug, pretend I am fine, and then suffer later. This comparison really set me reflecting on why I am so opposed to asking for or accepting help.

I am in denial

One of the things that I think it comes down to is that I am often in denial that I am as sick as I am. I won’t let myself admit that I need help because I don’t want to deal with the consequences of needing help, of knowing that the sensible decision is not to participate in certain activities, of asking others to look after me. I don’t want to admit that I am sick. I don’t want to feel “weak” and needy. So I just pretend that I’m not sick, not only to others, but to myself.

The problem with that, is that I am sick. And pretending I’m not, sadly, does not prevent it being true – if only it could. So whilst, for that one week with friends, I was able to push myself and do a lot, and I was able to somewhat pretend I am not sick (somewhat is in there because honestly I have no idea what ‘not sick’ feels like anymore!!), I have spent the last three weeks in bed, almost full time. I will just add here, that the only person to whom I was successfully able to pretend I wasn’t sick, was myself; my friends are a little smarter than that!! So running away from admitting and dealing with the fact, when everyone else knew it, has ironically led me to be sicker, which is just a little bit silly!

Not only that, but why should I feel like it is weak to ask for help?  When others ask for what they need, I actually think it is really strong and, in general, I think it is a very good skill to learn. We all need help: disabled, chronically ill, or not – and knowing what you need and want from people seems to me to be very admirable.

I ask why, but I know why! I’ve already written a blog post on why. It’s because independence is seen as such an important virtue, a goal to strive for, and although I don’t rationally believe that independence exists, my internalised ableism continues to tell me that unless I do something myself, I am a burden. And my inability to ask for help directly comes from this need not to feel like a burden, not to feel weak, not to feel dependent, and most importantly not to be sick.

And I can list so many examples of times where not accepting the reality of my illness and my needs has held me back: for starters, at university I made myself incredibly sick trying to keep up with everything, and didn’t ask for accommodations because I didn’t want to be different; my refusal to use a wheelchair, when it was so clearly going to help me is also a result of not wanting to admit and deal with being sick, nor stand out for needing help; the fact that I never ask for a seat when the bus is crowded, preferring to stand and nearly pass out instead. There are so many examples.

A little bit of agency

Whilst away, we had a discussion about asking for help and accepting it. When I was asked if I would like it if people offered to help more, I vehemently said no. I surprised myself with how much vigour I put into my answer. I like the idea that if I need help, I can ask my friends – thereby retaining some agency, and some ability to decide on the help that I get. At least that was my argumentation then.

Thinking about it now, I’m pretty sure I said “no” so strongly because I knew the people around me would offer me help where I would actually need it, and I would constantly have to confront the fact that I need it much more often than I say. I would have to accept the help, and not just get on with it. If I had to ask for help, the onus would be on me to ask – which, yes, does give me more agency, but it also gives me way more chance to continue pretending to myself that I am healthy and don’t need help. In reality, my friends have some idea of the support I may or may not need, and I can still say yes or no if they offer it, so I do still have agency to accept help, but far less chance to run away from it and ultimately hurt myself through my own denial.

Energy as a currency

When people ask me if I need help, the answer is no, because I can often, in the moment push myself to do something. It is, however, likely to make me a lot sicker later, and I will almost certainly suffer for pushing myself. But I “can” do it. The thing is, that takes the question people are asking far too literally. They are offering to help because they recognise that it would be useful for me, and they have the ability/energy to do so.

Part of the problem for me here, besides the denial, is that I have little concept of how much energy non-sick people have. When people offer to help me, say cook some rice, my answer is often “sure, if you have the energy”. And almost always they answer with “yes Kat, I have energy. I’m not sick”. Energy is a currency I don’t understand. When something seems like a mammoth task to me (and many things do), asking someone to do it for me seems impossibly and unreasonably huge, because I cannot qualify how easy or hard something is for someone else to do. Its perhaps easier to understand with money, where it works much the same. Five euros is worth a lot more to someone with very little money than to someone with a lot.

Asking for help is strong

The reality is that asking for help is really hard, as is accepting help. But it is such a necessary, useful, and strong skill for everybody to learn. Yes, it means accepting that you are not a superhuman, that you need help with some things. But who doesn’t?

I think its high time we took more pride in accepting and asking for help when we need it. So I am going to try not to run away from my insecurities and to start learning to ask for and accept help where and when I need it. It’s a work in progress – but it’s a good lesson.

And I am now going to practise asking for help. If you enjoyed this post feel free to check out my other posts, my youtube, and my social media, and if you are able to I always appreciate donations to my Ko-Fi.