I Shouldn't Feel Guilty for How I Spend Money Donated to My Life With Chronic Illness


Yesterday I posted a picture to Facebook to show my newest hair color. I’ve taken to using bright colors from Manic Panic to cover my gray hairs, because it looks awesome, and it is kind of fun.

woman with short green hair

Immediately after posting, I judged myself for doing so.

Not only did I judge the picture, and offer harsh self-critique for any perceived flaws, but I judged myself for posting a fun photo that demonstrated that I had completed a task that some might find indulgent.

Because I have chronic illness, including mental illness like PTSD and depression and physical illness like fibromyalgia and arthritis, I am unable to work a regular, full-time job. And because I am restricted in my work, I have limited resources and have started a fundraiser to help with the basic costs of living and maintaining wellness to the degree I am able.

My fundraiser pays for things like rent, utilities, transit costs, medications, and groceries. I can’t pay for these things on my own right now because of my disability. And, hopefully very soon, I will have a hearing to gain some benefits through the Social Security Administration, but that assistance is not yet available for me. So, I ask for assistance from others to help me pay for my daily needs.

Asking for others to pay for my daily needs is not an easy task. It can be a really humiliating experience, to ask for help. Something about being in need makes me feel inferior or faulty or insufficient. And my asking makes some other people see me that way. Asking for help makes some others feel that they have a right to determine your choices, or have a say in how you think, what you believe, or where you go. And over the year that I have been requesting assistance, I have suffered much from the comments of those few.

There is this strange idea of dessert that informs how some people behave toward those in need. Not the tasty sweet kind of dessert that follows a meal (unfortunately), but the idea that one deserves what one earns. And usually the people who feel that I don’t deserve things have this idea that “earning” means “money paid for producing things.” That concept of earning isn’t completely unwarranted. It is definitely a way that we earn — through the production of goods and services. But the idea of basic human rights and meeting basic human needs can’t be tied to that particular idea of earning and dessert.

I shouldn’t feel guilty that I colored my hair. Hair care is not a thing that you stop deserving because you are ill and need assistance to pay bills.

The idea that I need to “earn” the basic things that make up a life or do without those things altogether is ridiculous. To say to someone who is fighting to overcome multiple health issues, “If you can’t afford water, stop drinking and bathing,” would be really crass and terrible. But, for some reason, it seems perfectly acceptable to some of the people I encounter to say, “If you can’t afford hair products, then stop caring for your hair.” Or, “If you ask for money for groceries, you need to stop ordering pizza delivery.”

There are a number of ways that people like to micromanage my life. They feel that they have a right to express what I deserve or do not deserve, because I have asked for help in paying expenses. And, on some level, I understand that they don’t have that right, but it still feels like “cheating” or “gaming the system” or “being selfish” or “self-indulging.” It isn’t those things. It only feels that way because of the criticism of others.

The fact is, every human being deserves to eat and drink and bathe and live in a home and have what it takes to be human. That shouldn’t be debatable. That should be self-evident. Humans need their needs met. That shouldn’t be a challenge to accept.

A lesser known or lesser accepted fact is, every human being deserves to choose for themselves how they meet those needs. I don’t need to be infantilized or disrespected. I don’t need to be told the ways that I can spend the money donated to funding my life. I don’t live in extravagant ways, and I don’t misuse the gifts that others have given me. I am a fully cognizant adult being. I can make decisions on my own. I am not inferior or faulty or insufficient. I am chronically ill.

Coloring your hair is not an extravagant misuse of funds. Lots of people go to a salon regularly and spend hundreds of dollars to get facials, haircuts, conditioning treatments, color and highlights, manicures, pedicures, and more services. They don’t consider those extravagant, but necessary. Some people even claim a tax deduction on such services, saying their “brand” or “position” requires their “professional” look. I cut my own hair, or use the occasional Groupon for a discounted cut at a random salon, and I color my own hair with a $10 pot of color — or sometimes leftover color that my daughter didn’t use. In fact, in the last six months, I’ve spent a total of $40 on haircare. That is a tiny fraction of what most women pay.

The point here is not the cost of haircare, however. The point is that I am allowed to decide what is best for me, and I am allowed to pursue reasonable self-care, even when I am dealing with financial challenges.

The idea that entertainment, self-care, or the purchase of any item outside of the most basic need must be sacrificed because of the financial challenge that my illness causes is offensive. It is offensive because I don’t cease to be responsible and capable of making wise decisions due to my financial status. It is offensive because I don’t “deserve” a fate that leaves me locked in a tiny studio without a television and eating ramen for every meal, simply because illness has alighted my body and not yours.

I work very hard. Harder than many I know. Each moment that I am up and moving and thinking, I am putting out ten times the effort of able-bodied acquaintances. Every time I type a word, I am in pain. Every step I take requires Herculean efforts. And my job right now — and likely for the rest of my life — is to be as well as possible, and to cope with the challenges that meet me when I open my eyes each morning. My job is not to “earn” by producing goods or services. My job is to survive, and to do so in the best way possible.

Doing that job requires self-care. Doing that job demands moments of joy. Doing that job means being human, and being the best human I am capable of being. And being my best includes allowing a moment of fun and fabulous color to offer me happiness and fulfillment, not self-critique and self-doubt.

Others make me doubt.

I know that I am not squandering anything, not faking anything, not abusing anything, and not taking anything for granted. I know that I am doing the very best I can with the resources that I have. I know I am working extremely hard at being the best I can be, and overcoming challenge after challenge after challenge. And I do not deserve to be haunted by the criticism and doubt of others, who don’t know what I am dealing with every day — every moment of every day.

Being chronically ill, being disabled, being unable to work in the ways that I once did, and being challenged by things that are simple for others makes me vulnerable to need and scarcity.  But it does not make me unable to make wise decisions and to follow the path that leads to my best possible situation. I deserve the right to make those decisions and follow that path without judgment and unsolicited advice.

Accepting help does not mean that I am tethered to the expectations of others.

So, the next time you think about commenting on how a chronically ill person could or should behave, take a moment and try to swallow that comment rather than speak it. And, if you are the chronically ill person who needs assistance, don’t let the comments of others cause you shame and self-doubt. You know what is best for you and your life. Your personhood is not diminished by your need.

I’m going to repeat that last statement, because I think it is so important:

Your personhood is not diminished by your need. 

My personhood is not diminished by my need. Anything that you deserve, I deserve. Even if I cannot “earn” it in the same manner, I deserve to be sated and satisfied and groomed and cared for and accommodated and respected and loved. Because I am a human being. And I should be afforded basic human rights.

Being ill isn’t a crime or a failure or a character flaw. It doesn’t make me less deserving. And I earn every step, every keystroke, every moment of every day by fighting to overcome the limitations that my disease presents.

So, please, don’t make any comments that could cause me to doubt myself. Don’t assert that I could try harder or do better or get by on less. Don’t micromanage my life, imagining that if my situation were yours, you would somehow know a way to navigate it in superior form. And don’t forget that, first and foremost, I am a person, deserving of basic human rights and the meeting of my needs.

My hair looks amazing. There is no reason to question or doubt or develop guilt over this small act of self-care, and this moment of joy. I deserve to have awesome hair, and I am planning to embrace and to celebrate it from this time forward. I am planning to embrace and to celebrate much, because I am settling into the understanding that my personhood is not diminished by my need. I will own and embody that statement, and I will fight for others to own and embody it as well.

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