A Spoonie’s Struggle for Independence


It’s a virtue sung by Beyoncé. A theme of many Hollywood blockbusters. Fiercely fought for on the battlefields and barricades, in the streets or the privacy of your own home, independence is the hard-won right to make your own life choices and the quality to look after yourself with limited help from others.

In our culture, self-sufficiency is synonymous to strength, empowerment and liberation. Unfortunately, it’s also an issue most people with chronic illness and disabilities struggle with on a daily basis.

The loss of independence in long-term sickness or disability can take many forms. From being housebound and having to rely on state benefits for financial support to needing help with grocery shopping, doing chores around the house or driving to doctor’s appointments.

Having to dependent on others for your most basic needs can have a huge impact on your daily life, self-image and relationships.

Roles and interactions change. Spouses in equal relationships might adopt the roles of caretaker and patient, focusing more on practical help than being romantic partners. When young adults are forced to move back in with their parents because they need round-the-clock assistance, family members can easily slip back into childhood patterns of dependency that are no longer fitting because everyone is all grown up now. And even when you don’t require physical care, regularly having to ask for support can cause imbalances in friendships and family dynamics.

Balancing dependency and self-reliance can also trigger all kinds of mixed feelings. You don’t want help but you undeniably need it. You’re grateful for everyone who’s lending a hand, but also feel so frustrated and guilty that you can’t do things yourself. On a bad day you might even take that anger out on the people offering you their support.

When you have to rely family, friends or professional aids to leave the house, do your shopping or make ends meet, it can leave you feeling vulnerable and powerless. The (not unrealistic) fear of what would happen if you’d be left on your own might make you cling onto your caregivers, creating a tension in your relationships. Guilt, shame and pride make it even harder to ask for and receive the help you need.

It’s no wonder that all these emotional and interpersonal changes can strongly affect how you see yourself.

The Struggle for Independence | The Health Sessions
Photos made by Sylvia Mulder and Adam Stones

How do you deal with losing your independence to chronic illness or disability?

  • First of all, acknowledge your feelings. It’s ok to feel sad, angry, ashamed and thankful all at once. It’s nobody’s fault you’re in this situation. It’ll take time to accept your new reality but having to ask others for help won’t always be so upsetting.
  • Remember: Even if you’re dependent on others for your physical care or practical support, you still have the right to make your own choices regarding your health, finances and/or the way you want to live your life.
  • Learn how to ask for and accept help. We all need a helping hand at some point in our lives. According to Nora Klaver, author of Mayday! Asking for Help in Times of Need, we underestimate how willing people are to offer their assistance. If you find it hard to ask turn to others for help, Klaver advises you to make your request as specific as possible and consider who’s the most suitable candidate for the job. Don’t always reach out to the same person and offer the other party a chance to say ‘no’ without feeling guilty. 
  • Talk openly with your friends and family. Share how you struggle with your sense of dependency (in a kind, constructive manner of course) and don’t take it too personal when your caregivers have some difficulties with the situation too. Try to find ways for you both to deal best with your changed roles and relationship.
  • On that note: Find a new balance in your relationships. Try to stay emotionally connected and interested in each lives instead of matter-of-factly ticking off caregiving tasks. Show your appreciation for they help and support without over-apologizing or putting yourself down. (Read this article on why you should say ‘thank you’ instead of ‘sorry’ if that’s something you struggle with).
  • Also: Let go off irritations when things aren’t done your way. You don’t have to unquestioningly abandon all your principles and standards when accepting help, but isn’t it nicer to spend your precious energy on something other than silly domestic quarrels?
  • Avoid emotional dependency. Do not solely rely on other people for your happiness.
  • Do somethings that makes you feel useful and empowered on a regular basis. It can be anything: something you can do yourself that showcases your strengths and abilities, something that contributes to someone else’s life or that improves your own.
  • Brainstorm ways to alleviate your sense of dependence. Maybe certain aids and services like renting a motorized wheelchair, special taxi fares for handicapped people or buying an e-bike could improve your mobility, isolation and independence. It could also be helpful to learn some ‘daily life hacks’ for your specific medical condition in occupational therapy. Lifting burdensome limitations can greatly improve the quality of your life.
  • Celebrate all your tiny accomplishments! Be proud; you’re doing the best you can.

I’d love to know: How do you find a balance between accepting much-needed help and living as independently as possible? 

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Jennifer Mulder

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