Some of the most painful aspects of chronic illnesses are not just the physical pains we must endure but also the emotions around our sense of self and our ability to stay in control of our lives. It is a constant battle.
Little by little our illnesses can strip away the things we have spent our lives developing, building, enjoying and identifying with. Overnight our careers that we spent our lives training for, developing for, enjoying, focusing on and sacrificing for can be gone. Leaving the rest of our friends and loved ones still doing the things we can’t.
Our careers are also our financial security and part of our identity as people. How many times have you been asked “what do you do for a living?” and you quickly realize how significant it is to other people. Many people even have their self worth invested in their job title and their place on the corporate ladder. But what happens when all that is taken away?
It’s a huge identity crisis and made me feel absolutely worthless.
If you don’t have alternative financial stability then many of us become dependent on the welfare system or relatives/loved ones for support. We lose more dignity when we feel we are a burden on others and no longer in control of what we do and how we live. It’s humiliating at times.
Even doctors will treat you more differently than they do other able bodied people. I can clearly contrast the way doctors and health care workers treated me when I was a healthier, independent woman and when I became dependent on the system for my health and security. It can be incredibly dehumanizing.
As people around you become frustrated with your health and inabilities they can say things that hurt us deeply, even if it is unintended. They are particularly difficult wounds because they come from those people we love and rely upon for our strength and to keep going. A cruel, thoughtless or shaming word from them and the damage is utterly devastating.
Being reliant upon strangers, health care workers and administrators is particularly hard as they have so much control over your daily life and they are often completely disinterested in you and you are merely a number to them.
Losing abilities like driving and being able to go out in the world, unaided, is also devastating and all these things can become overwhelming to people such as myself who have always treasured freedom and independence.
As we have more and more tests done on us and our bodies probed and invaded, we feel the last shred of dignity slip from us. After many years of this most chronically ill would rather stay home and suffer then go to another appointment or see another doctor in the ever changing landscape that is the public healthcare system.
Able bodied people can plan holidays, parties, social activities, outings and make plans that we can simply no longer do without help and the strong possibility that we could be too sick to do them. when we can’t do them it hurts us much more deeply than the average person because it may have been something that we had been looking forward to or even living for!
I have had to learn how to accept these things and build a wall to protect myself and the dignity that I have left. I have had to let the unthinking words of friends and loved ones slide off my back and build strong boundaries about who I can let into my life and share a close connection with.
I have had to find a doctor that sees me as a person and beyond my physical symptoms, and this alone can take many many years to find! I have had to find friends who are both empathic and patient. I have had to work hard on my self talk and how I see myself. However, this is an ongoing battle for me and I have frequent relapses and times of utter despair and worthlessness. In those times I am reliant on my inner circle to help me back on my feet and keep going.
I am particularly careful to avoid those people who often try to compete with their “…oh that happens to me too!” Or “I have been in worse situations” when they interact with you. Especially when they are not living with illnesses and have not lost so much of their existence to diseases.
These little passive aggressive comments only serve to try and belittle or demean our daily struggles and rob us of our dignity. The fight for our self esteem, dignity and independence is a constant one and often we must fight ourselves and our emotions when stress, pain, flares, relapses and life events come along to derail us.
I am fortunate to have found a few chronic buddies that have become my world and we share our struggles and support each other the best ways we know how. We give more to each other than most able bodied friendships share because we keep each other alive and keep each other going in times that most people could never imagine.
My inner circle (no more than a handful of people) are tried and true. They love me and believe in me when I can’t do it myself. They hold me when I am drowning and they tell me how much I mean in their lives. Knowing that we are worth something to someone else when we feel like we don’t mean anything to ourselves is so important that I can not adequately describe with mere words.
Everyone needs dignity and support in life to cope with all that it throws at us but this is especially true of those who must fight for life every day and live a life that very few can imagine.