As a young adult with chronic illness, I have received a lot of snide comments from people about their perception of my lack of independence. I also find that I receive snide looks when I let it slip that I require help with things that other people may not.
These snide comments or looks can come from anyone; whether it be family, people close to me, medical professionals, or even complete strangers. Independence can be difficult to retain and maintain when you have a chronic illness, and it doesn’t help when people point out that they think it’s lacking, especially if your independence is one of your insecurities
Unsolicited Outside Opinions.
I recently saw a post online saying that the only way to help someone with chronic pain is to NOT help them at all. Apparently, if you do things for someone with chronic pain, they aren’t going to want to learn to do those things for themselves.
As someone with Fibromyalgia, I find this assessment extremely flawed. Sure, it may be accurate for those recovering from an injury or surgery, however, it is certainly not accurate for those with chronic illness. For many people with chronic illness, there is no recovery.
Sure, symptoms may become better managed, however, they may never go away. So, refusing to offer someone help when they do need it just because they may not need it in the future seems pretty illogical to me.
This isn’t the first time I have encountered people with this kind of thinking in my chronic illness journey. When I was about 13, my mother was told by an intern psychologist that the reason I didn’t do things around the house that ‘normal’ kids would do, such as packing their own lunch every single night or fetching dinner from the kitchen, was because I simply didn’t want to.
My mother was told that I didn’t struggle to move, I just had behavioural issues and lack of motivation. This obviously wasn’t true. My parents didn’t listen to this person, however, because they saw the slow progression of my condition. They saw the nights I laid curled up in a ball, whimpering or crying in pain, unable to move.
They saw how I became more and more dependent on my crutches (I’ve now switched to a walking cane) because I was in too much pain to bear my own body weight. I’m so glad my parents did what they knew to be right for me, as it was only with their help that I was able to make it through high school without becoming more overcome with fatigue than I already was.
Moving Out of Home.
Moving out of my parent’s home was a massive step for me when it came to gaining more independence. It felt good because I was doing something completely for myself. I searched for flats, I wrote up budgets and did everything else that came with planning to move.
It all seemed to be coming together perfectly. It was during the first few weeks of moving that I received my first reality check. Moving my stuff from my parent’s place was both time consuming and extremely exhausting. I needed a lot of help and my pain levels skyrocketed, both from the physical task of moving as well as the stress.
Once I was finally settled, I realised I was drowning in all the housework. I was pushing myself to my limit and not really getting anywhere. It wasn’t long before I realised that no matter how hard I tried or wished it was so, moving out of home didn’t make me require help any less.
It really struck me one night when I was lying in bed, having a pain flare, wishing I had the energy to get up and get my medication. I was far too sore to move, and I didn’t have anyone to ask to for help like I would have at home. I felt extremely lonely, and I cried myself to sleep that night.
Relying on My Mother for Care.
Despite the fact that my mobility is hindered due to my chronic pain, I do not fit the criteria for a caregiver. I was refused carer hours when I applied for it after my 18th birthday, and again after I moved out, despite the fact I had received carer hours prior to my 18th birthday.
They apparently don’t provide help to people over 18 who don’t have a diagnosis that is on their checklist, no matter what the person’s physical ability is. At one stage I was even told: “well if you were diagnosed with [insert diagnosis with similar symptoms to mine] we’d be able to help you.”
As a result of this, despite me not living at home, my mother drives me around, does my washing, and helps me tidy my room. I feel bad for needing her help because she has two boys to look after, both of which have autism as well as one of them having a Chromosome Deletion.
However, I have no choice. I am in a place where I simply can’t do these things for myself. Believe me, I’ve tried. Just this morning I started tidying my room before my mother arrived to help hang up clothes, and by the time I was finished, I was shaking with exhaustion.
I could barely hold myself up in a sitting position, despite the fact that all I had been doing very little activity. My mother is honestly my hero. I wouldn’t be able to function without her.
Not long after my application for carer hours was denied after moving out, I was talking to someone about how I had been refused help and how I was frustrated. When I tried to explain my situation, they replied: “well, maybe it’s because they want you to be independent.” I was shocked.
This implied that I was choosing to be dependent and that I could just switch my dependence off. I was torn between wanting to laugh and wanting to cry.
I would be fully independent if I could.
People with chronic illness don’t ask for help ‘just because’. They ask because they need it. This idea that the chronically ill should be left to do everything for themselves is extremely harmful.
Sure, there are the people who have chronic illnesses who are fully independent, and I respect them for it. However, not everyone can manage that. One thing that I don’t think people that haven’t experienced chronic illness (first or even second hand) understand is that if I could do these things for myself, I would.
I’d have my driver’s license, I’d be living in a student apartment on my own all the way across the city, and I’d be studying full-time, doing the course I dreamed about throughout high school that I had to give up due to my health.
The one message I want to convey in this article is that my dependence is not a choice. It’s me doing the most that I can.
About The Author
Amy Clements is a 19-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.