A Little Money Is a Big Deal When a Partner Has a Disability

A Little Money Is a Big Deal When a Partner Has a Disability

I lost some money today during an online transaction.

It was 3,150 Philippine pesos (around $60). The amount was a client’s payment for a product she had bought from our online jewelry store. That store is our bread and butter. Currently, we are struggling due to the celestial prices of gold in the current market. Few customers are buying because they can no longer afford our items.

I was supposed to give the money to our supplier to pay off a new batch of items. Just minutes before the glitch happened, I was so happy. Finally, I could pay off an account that had been outstanding for several weeks. I could finally deliver my client’s long-standing order of customized goods, and hopefully, they would be satisfied.

Then, just when I thought that was going to be settled, things spun out of control. The money disappeared.

I’m very disappointed now. Sixty dollars may not seem like much, but here in the Philippines, that is one-fourth of a minimum wage earner’s monthly income. It could have bought enough milk for my daughter and food for Mommy and Daddy to last perhaps a week.

Since money does not come in regularly for us freelancers, we treasure any amount that comes our way, down to the very last cent. Any amount of money is a huge help in keeping my family afloat. Earning money draws us closer to our goals of living independently and creating our own life as a unique and separate family unit. These are typical milestones for young couples, but when one partner is a person with a disability, they can be tremendously important. Unfortunately, the world has its cruel ways of seeming to pull these treats far out of these families’ reach.

I don’t want to rely on handouts from our parents and older relatives, on account of the saying, “Whoever pays the rent makes the rules.” If I can, I will handle my own family’s expenses. I don’t want other people worrying about our daily sustenance, even if it’s only food, gym memberships, and baby needs for now.

Truthfully speaking, my husband has health needs that a typical employee’s basic wages cannot cover. His epilepsy medication alone would cost us nearly everything we earn per month as small and struggling business owners. Hemophilia maintenance is also expensive. Thankfully, we don’t worry about it because the local organization Hemophilia Association of the Philippines for Love and Service (HAPLOS) bears much of the burden for us.

We’re thankful to people who choose to help us, knowing that it’s hard for us to help ourselves in some aspects, given our current situation. However, we do not wish to burden them more.

At the same time, as a wife, I long for things most spouses do. I yearn for space and privacy within our nuclear family. I yearn for our home to be a castle of sorts in which my husband and I are the king and queen and our daughter is rightfully princess.

Sometimes, it is depressing that finances stand in the way of achieving this goal. Factor in the complications of chronic illness, and it seems almost impossible to do.

Meanwhile, we’re trying to take things one day at a time. The first step is to get our personal finances together.

Now, to get that lost money back.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.

Alliah Czarielle, or Cza for short, is a life partner to a person with hemophilia and epilepsy. Her life’s dream is to enjoy a happy and contented life with her family, while pursuing her own passion for arts, crafts, entrepreneurship, and fine jewelry. She is a strong advocate for equal rights and support for people with disability, as well as people with mental illnesses, being a struggler herself.
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Alliah Czarielle, or Cza for short, is a life partner to a person with hemophilia and epilepsy. Her life’s dream is to enjoy a happy and contented life with her family, while pursuing her own passion for arts, crafts, entrepreneurship, and fine jewelry. She is a strong advocate for equal rights and support for people with disability, as well as people with mental illnesses, being a struggler herself.

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