Tag Archives: proud

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.

Disability Pride

July is Disability Pride Month!

I have to be completely honest, before I became part of the disability community I did think of disability as something sad. I didn’t know anyone disabled (I probably did but was unaware) and the way it had been talked about around me was as something tragic.

I was also in deep denial about being disabled. My illnesses were never acknowledged by my family, and still they will run from the term “disability.” Sometimes I struggle to understand their fear of it. It goes far beyond my lack of understanding of disability in my childhood. This is the first year I acknowledge my disabled pride, and yet I still do it almost anonymously because I am still surrounded by toxic attitudes (baby steps).

To be proud and disabled to me is about accepting, loving and empowering the parts of me that are different to the majority of others. It should be about sharing all of myself without trying to hide the “sick” bits. For my autistic side, it means I should be proud enough of myself to unmask. On top of that it means the ability to celebrate things that were once shunned in our society and educate others so that we get further and further from old and destructive mindsets. It means so many things. I endeavor to try to share more about this topic throughout the month here, for whoever wishes to listen!

Despite all there is to be proud of, I still feel the element of sadness. To me, it has to do with the grieving process of leaving behind what I thought my life would be before I understood that I was different to the pictures I had in my mind. It is seeing the sadness on loved ones’ faces when they seem disappointed in my abilities or lack thereof. Disability Pride Month should be about coming to understand the sadness and being proud that it is part of my disabled experience. To understand that it is by no means only sadness– it coexists with a strong, fulfilling, fun and happy life as well.

Stay tuned for more disability pride in July!