A chronic illness or disability can affect a person in a multitude of ways. Profound pain and unrelenting fatigue can impact on an individuals mobility, affecting engagement in employment and education. Financial loss and a lack of freedom can be crippling. Less interaction with others due to debilitating disease can lead to devastating social loss, resulting in reduced quality of life.
The myriad of ways in which illness intrudes are a burden for many. Unfortunately chronic illness and disability are often accompanied with loss of independence, whether its onset be sudden or gradual. For most, this leads to feelings of inadequacy, worthlessness, helplessness and hopelessness.
As a young adult living with multiple invisible chronic illnesses, I have seen debilitating symptoms interfere with my independence and I've had to surrender many dreams. Before illness struck I was in my final year of high school, slowly growing in independence and preparing to discover life out in the big wide world. Instead, I've been forced to trade that freedom for pain and fatigue.
Independence is such an important contributor to ones identity and self esteem, and it is vital that we still retain as much independence as possible despite dealing with disability. So what steps can we take to help empower and equip ourselves to live a self sufficient life despite chronic illness?
Step #1. Face the truth. I believe that it is essential to face what independence you have lost and allow yourself to properly grieve what you have lost. One of the biggest losses I've had to face so far is financial loss. Due to a shopping list of symptoms I find it impossible to manage regular work. Accepting the fact that I am unable to work sufficient shifts has been incredibly difficult but I've discovered that a job and income do not define my identity or independence.
Step #2. Accept help. This is easier said then done but accepting defeat may mean that you can focus on gaining other victories in your life. Swallowing my pride and filing for disability was one of the most hardest, humiliating, degrading and humbling things I've ever done. Accepting financial help has allowed me to gain independence in other areas. I've been able to afford to buy a car and get my licence which has helped me grow in independence immensely. Simply asking for help can open up other opportunities for independence.
Step #3. Focus. Find areas in your life where you can work on improving your independence and self sufficiency and focus on them. I saw university and a career as an opportunity to become Miss independent but I'm now learning to view independence differently. Sure, I may be housebound most days but I can be independent in being my own best health advocate. I can educate myself and take an active role in my health care. Finding a new hobby or developing a new skill that you can focus on by yourself can also increase independence.
Step #5. Celebrate. Yes, celebrate! No matter how small your achievements, celebrate them. I'll never forget the first time I filled my car with petrol on my own. I struggle with arthritis in my hands so holding the pump is quite a painful challenge but the fact that I drove all by myself and got petrol despite CFS and arthritis is something I celebrate everyday.
Step #6. Find support. Knowing people that are also experiencing the difficulties of chronic illness who can appreciate how amazing your achievements are is invaluable. That's another reason why I started this blog. Sharing your success can lift your spirits and instill pride and independence. When my doctors discover what is causing my increase in pain and get it under control, I plan on attending a local support group that helps encourage independence and self sufficiency and celebrates this together.
When living life dealing with a chronic illness it seems as though independence has dwindled significantly. Upon reflection though, I realised just how independent I really am. I've learnt to deal with my feelings, emotions and the pain independently. I've learnt to manage my condition, make sacrifices and make my own decisions regarding my health.
To the person in well health, it's probably not the perfect typical picture of independence but with those of us living in constant chronic pain we are incredibly independent and self sufficient in many other areas and that's something that should be celebrated.
This article was specifically written for submission to Patients for a Moment blog carnival hosted by Selena of Oh My Aches and Pains. My first time participating in a blog carnival!
Article written by Emily Ruth
© chronicallycreative.net, 2011
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