Tag Archives: caregiving

Dear Healthcare,

My body already doesn’t feel like it belongs to me at the best of times. Whether it be emotional or physical changes due to medications or simply due to a physical condition, I almost never feel in control. This is never more true than during medical appointments. I have encountered just one doctor throughout my life who asked for permission before each and every single thing she did. Even the small things: touching my shirt, touching my arm, taking a blood pressure. That made me feel like I was a human being who had autonomy over my body and all its parts. It made me feel like I had a part to play in my health rather than being someone’s science experiment. Those are the little things, which most people just take for granted at a typical appointment. Of course the nurse can take my blood pressure, otherwise why am I here? That’s not the point. The point is she is taking MY blood pressure. MINE. Therefore, I should be the person who decides when this happens. 

During some appointments I don’t even feel human anymore. I am being moved around, poked and squeezed without ever having really understood why, let alone given my permission.

I believe this should be the standard throughout medicine even for young children. A lot of my medical trauma originates from being held down at doctor’s appointments as a child, not given a choice in what was happening to me at all, and not understanding why it was happening. Of course children cannot give their own full consent for major surgery or treatments because they are unable to understand the full consequences or their situation like the adults and medical professionals around them can. However, within these things there is still room for discussion and asking permission. Furthermore, in non-life threatening instances and/or casual check-ups there is definitely flexibility to have those conversations with parent, child and doctor/nurse. 

Especially when there is anything that involves touching a child (or anyone’s) body it is crucial that they understand at their level 1. Why this is happening 2. What is going to happen exactly 3. That they say yes this can happen now. If they say no this cannot happen and are in a calm frame of mind, maybe it doesn’t need to happen right then. Maybe it can happen in a few minutes after a deep breath or a little further conversation. 

It often surprises me that in 2022 healthcare professionals still don’t see the need to ask. They say to me (as an adult) “this is what we’re doing” “lie down” “put your arm here” etc. The other day, my arm was grabbed and forced over my head without even asking me to move it first or asking my permission to do so. This upset me greatly. If I had been calmly asked to move my arm I would have moved it, of course. If they had asked permission to position it for me, I would have let them. The way they chose to do it has a bad outcome for me mentally (and physically because it’s uncomfortable). 

Consent, permission, discussion, patient inclusion, all these things and everything associated with them are crucial for a kind and compassionate healthcare experience. It can make it not only smoother for the patient but also for the provider as well. Fewer screaming children or tearful adults, such as myself, and better outcomes in the long run. The doctor’s office does not need to be a place children, teens and adults alike fear because they are going to get restrained and hurt by scary people with scary devices. There is another way. Adults don’t have to feel that fear either, whether it be with them from childhood or newly-acquired from a recent procedure. This way, people are more likely to attend their cancer screenings and other vital appointments and to engage positively with the healthcare field throughout their life. 

So, if you are going to touch someone else’s body or do anything else to it and that person is conscious, ask them for permission. Explain what is happening and why and allow them to have the control of saying yes or no. 

Disability Pride Series: How can I feel proud when feel like a burden?

The idea that I am a burden because of my illness takes up a lot of space for me. I feel it all the time. Every day. When I genuinely need assistance with something I don’t dare ask because I am desperately trying to calculate who I haven’t “used up” all my calls for help with.

In general people expect illness or pain to “go away” after a certain period of time. Depending on the level of patience of the person, that time probably varies from just a couple of days to maximum a couple of weeks. But what if you are sick and in pain every single day? And you need the kind of help that people offer in “special circumstances” every day? That is difficult for outsiders to understand and it fills the sufferer with an immense guilt.

When someone breaks their arm or leg and rely more heavily on friends and family for a period of time, they often express that they start to feel like a burden. For people who are sick or need assistance for months or years a time, that feeling can begin to chip away at their sense of self, their confidence, their worth and overall wellbeing. This is heavily influenced by the people around them, of course. If those people aren’t accepting or understanding of the situation, that makes the situations even more difficult. If the people around you are supportive, understanding, reassuring and honest about their role in your life, that will make it easier to an extent.

I don’t have a good answer to embracing your disability and ridding yourself of the burden complex. It can be overwhelmingly difficult and for some impossible. The main thing to remember is that having the help you need to get through each day or each task is not something to be ashamed of. And if anyone you are asking for that help makes you feel that it’s shameful then they should not be in your life. People who are unable to understand the way you need or want to live, have a problem, not you.

Honesty is also very important. The people around you are allowed to be honest about how they feel as much as you are. They should be able to say “I’m tired today” or “I’m having a bad day and I’m going to ask someone to help me help you, if you don’t mind.” If there is a healthy dialogue of that kind then you know that you are not being a burden but everyone involved can express themselves and their human emotions honestly so that no one has to try to assume that the other is thinking of them in a certain way. All this is easier said than done because I know many people rely on a small handful of people willing to help and support them. If you don’t have an army of people to choose from, of course relations can get a little tense at times. Those tense moments are part of life, whether it be between friends or family or carers and patients. No one can be an angel at all times and that’s okay too. Just because there is a moment of annoyance doesn’t mean that the love isn’t still there or that anyone is thinking of you being a burden. Our minds just tend to go to the most extreme scenario, when in fact someone might just be annoyed about something unrelated.

For me, Disability Pride Month is about trying to get rid of this feeling of being a burden as much as I can. And replace it with pride about my accomplishments and all my good traits. Even if feeling burdensome always lurks in the background, it would be something just to put it there- in the background, and bring the positive things to the foreground so that they take up the most space in my mind and can possibly overpower the negative feelings at times. There is not a perfect answer, at least I haven’t found it yet. I haven’t gotten all the way there. But this month is a start to pushing that away, embracing everything amazing about me and my disabled body and acknowledging everything that I can do despite my challenges.