Empowering Your Attitude to Effect Change
Living with Parkinson's disease affects you on many levels. On the other self-help pages, we talked about physical obstacles and offered some solutions for overcoming them. There are also emotional and internal attitude barriers that need to be addressed.
Your life is changing and you are definitely having some feelings about it. But you are still completely you.
There are some suggestions here on empowering your attitude. They can be very valuable in assisting you to cope effectively with all your changes.
Changing your attitude can change your life.
Also, empowering your own attitude gives others the permission to empower theirs. Kill the myth within yourself, and your example teaches other people to do the same.
And, what about everyone else? They're all having feelings too. Your family. Your co-workers. Your friends. Your neighbours. Strangers.
There is a lot of stigma surrounding disease and disability in this culture. There are a lot of myths about people living with disabling diseases.
Dealing with your own feelings and attitudes, as well as other people's feelings and attitudes, can be some of the most difficult challenges in living with PD.
Some of your own thoughts about having PD may have been formed by the mythology that exists in the world. Consequently, it can be very healing to debunk those myths within yourself.
Debunk them, as much as possible (it's a process, remember), before meeting those attitudinal barriers in others. Their attitudes have been formed by the cultural mythology also.
As said, this is a process. Go easy on yourself. You'll get better at dealing with other people's attitudes.
You will become more and more neutral with other people's opinions and ideas about disease and disability, as you denounce the false myths within yourself.
This process of empowering your whole self by letting go of the lies, can be one of the most healing gifts you can give, not only yourself, but also your loved ones, and even a complete stranger.
Knowledge is power. Peace of mind is priceless.
You are a whole being, and both your body and mind need your attention and care. It is a lot easier to work on your attitude if you are feeling good physically.
Find your 'whey' out of the debilitating symptoms of PD by exploring the excellent resources on this site. They can support you in your efforts to restore your health.
Following are some of the myths and ideas about disease and disability that you may encounter within yourself and within others.
This is the attitude that a person with a disease or a disability is a 'second class citizen.' This idea can be very hard on a person's psyche. Know, with certainty, that it is a lie. It is a cultural myth.
You are not a second class citizen. You are simply a person living with Parkinson's disease. If you can kill this myth within yourself, others will follow your lead.
You are still a valuable member of the population. Your feelings still count, and your opinions and ideas are just as valid and important as ever. You don't need to prove this to anyone; you just have to believe it for yourself. Value yourself - that's what really counts. When you value your own worth, the importance of other people's opinions falls away.
Some people feel sorry for a person with a disease or a disability. You probably feel sorry for yourself sometimes. This is normal, but it doesn't need to control your life.
When we feel pity for someone, we see him or her as small, or as a victim. In this way, sympathy can lead to very patronizing attitudes. If you wonder why someone's pity sometimes makes you angry, it may be because they are not seeing you, they are only seeing your disease. You are so much more than your disease and you know it.
Compassion. You can feel the difference when someone treats you with compassion as opposed to with pity. The difference is that they feel for you, but don't feel sorry for you.
Self-pity, as you probably know, and someone else's pity, as you also probably know, can be crippling. It can maim your sense of independence. Have compassion for yourself and for your experience, and feel how much more tender and real it is.
Self-compassion opens a huge door on your path to healing. Leading by this example of being compassionate with yourself can also be very healing for others. It can teach them how you want them to interact with you.
This is a big myth. It is the idea that people with a disease or a disability are braver, emotionally stronger and more courageous. It's not true. It can sometimes feel good to be treated as hero or heroine, but ultimately you're being told that you're special because you have a disabling disease. Can you see how people who believe this myth are again just seeing your disease and not you? This is a tricky one.
You are learning to adapt to living with your disease. You have already learned a lot. How does it feel when someone praises you for just completing ordinary, everyday tasks? It may feel invalidating. You have simply learned to adapt by using your skills and your knowledge. And good job on that, but it doesn't mean you deserve either hero worship or pity. You are just a human doing the best that you can.
The human race is an incredibly creative and adaptive species. (Thank goodness!) You are one of the tribe.
Watch out for this 'specialness' in your own mind, too. Feeling superior is just as detrimental to your health as feeling inferior. Yes, you do have to work harder at some things than other people do, but there will always be people who have more challenges than you have, too. And there will always be people who appear to have it easier. This is life.
The trick to killing this myth is to give up comparing yourself with others. (It's a big job!) If you compare your abilities with someone else's, you undermine your uniqueness. Fulfill your own unique potential in the best way that you know how.
If your disease has progressed to the point where your symptoms have become visible, such as tremors, you will likely encounter people who will dismiss you. People are afraid of disease and disability. They may think you are mentally ill or even dangerous. Try and be compassionate with other people's ignorance. Be as forgiving as possible. You are healing yourself, and their processes are not your responsibility.
Becoming angry at a person who doesn't understand will likely only make everything worse, including the tremors. Be as gentle with yourself as possible - it just doesn't matter what other people think. It only matters what you think of yourself, and you know that you have come a long way.
People may also dismiss you as being unable to accomplish a task before giving you the opportunity to show your skills. Be patient with them and with yourself. Just keep doing what you're doing and don't let their beliefs 'get on you.'
Others may want to help you even though you might not need help. There is a fine line between asking for help and that of just having other people do things that you know you are capable of doing yourself. Maintain your independence. Do as much by yourself as possible. Don't be afraid to ask for help, but watch out for the self-pity monster who wants to steal your independence.
The Spread Effect
This is a particularly horrible mythology. It is the idea that if a person has a disease or a disability, the whole person is diseased. This lie says that a person's disability has spread to all parts of them - their personality, their ability to think, all of their senses are damaged. This lie may even include a belief that a person's disease or disability is catching, or infectious.
(Hopefully your mind is starting to shout "Myth!" when you meet attitudes like this, instead of thinking, "that person should be kept sealed in a jar forever until the end of time!")
This idea of 'the spread effect' can be one of the hardest kinds of prejudice to deal with. You can counter it within yourself by focusing on your abilities and not your disability. You can only effect change in others by first effecting change within yourself. You know that you're still you - and that's what matters.
Deal with this myth in the same way that you would any of the others. Be patient and forgiving with people (and yourself). They don't have as much information or experience with disease as you do. Educate yourself so that you can educate others. It's hard to learn from an angry person, so work on keeping your emotions in check when dealing with another person's lack of understanding.
Keep your focus on you, and keep validating yourself for all the shifts in awareness that you have made. The more compassionate you can be with yourself, the more compassion you can truly have for others.
People do have a lot of ideas about who a person is if they're living with a disease or a disability. Stereotypes can be so maddening because they diminish the individual, their skills and their abilities. Stereotypes say, "all people with this disease are like this." They say NO to each person's uniqueness.
Some stereotypes have already been mentioned. Hero, invalid, mentally unbalanced, second class citizen etc. The variety of stereotypes is huge. People believe that a person living with a disease or a disability are all:
The stereotypes don't matter. There are zillions of them, and they all diminish the individual. Every single person is unique and deals with their challenges in unique ways. The best way to combat stereotyping is to honor and own what a unique creation you are.
- Fragile and need to be protected from the harsh realities of the world
- Angry and bitter and sad
- Inspiring paragons of virtue
- Closer to God
- Sweet, gentle and good-natured.
If your Parkinson's has progressed to the point where you are unable to work and have gone on disability, you may have some guilt. (And you may not - and if you don't, Well Done! This is, after all, why such legislation was put into place.)
Your identity may be so tied up with your job that not working feels like a death. And so it is. Don't be afraid to grieve that loss of identity. But just as you are not your disease, you are not your job either. Whether you are working or not, you are still a valuable member of society.
Some of your guilt may be about dealing with your parents' ideas around working. Some of their messages might include, "If you don't work, you're nothing, nobody" or "So you have a disease. Do you know how many times I went to work sicker than a dog?"
Go easy on yourself with this process. It's a big deal to let go of your parents' information about working. You have the best information for you. Trust yourself. If stopping work is going to be the best solution for you, do it. You are you, not your parents. And they were never you, living with Parkinson's.
You may also have to deal with other people's feelings about how the government treats people with disabilities. They may be very angry and feel that someone on disability is 'getting it easy.' This is a myth like all the others. Don't buy into the lie. No one knows what your unique experience is, and it's not your responsibility to change someone else's mind. Let them believe whatever they want to. If you don't get hooked, (because you trust your decision and own your unique experience with PD) then their anger only hurts themselves.
If people can't see the effects or symptoms of your disease, they may treat you with varying dispositions.
They might think that you're not sick enough to be on disability. You're just sapping the government. It's a lie. Don't buy it. Trust your own experience. It's their problem what they think.
They might think that you don't yet need compassion or accommodation because they can't see what you are experiencing. It's a culture of 'see it to believe it.' Again, let them have their opinion and keep the focus on YOU.
You might believe one of these ideas. Be kind with yourself while you're unravelling what is you and what is not you. We've had these mythologies ingrained in us since childhood, and it's going to take a while to dig them out and let them go. Be real with yourself. No one knows what is the best choice for you, except you.
You may find that people are afraid to talk with you, afraid even to be close to you. You might find that people are nervous or only talk about very mundane subjects. (never about your disease!) They are likely afraid that they will say or do the 'wrong' thing.
What's the best way to deal with this? Perhaps it is to encourage people to be real with you. You might want to try asking them how they are feeling about your disability? You could try telling them that you're still you, still perfectly imperfect, and that you still want to talk about real things .. including your experience with your disease.
The whole point of debunking these myths is to break down the barriers that exist between people. We all want to be accepted. We all want to be valued. We all want to love and to be loved. We all need a good laugh. This means that we have to start having conversations that may be uncomfortable at first, but we will all get better at it with practice.
People with diseases and disabilities are not more mysterious than other people. You're still a creative person with concerns and questions and hopes and desires, like everyone else.
The purpose of killing these cultural myths is to bring us out of isolation. To praise one another for our differences, and to support each other in our challenges.
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