I had an attention deficit disorder, I had a generalized anxiety disorder, I had a depressive disorder. I still do. I am fortunate that these things are no longer problems. I have been diagnosed with Parkinson’s disease. Fortunately, that isn’t a problem either. Let me explain.
I used to believe that either you had a mental health problem or you didn’t. Same thing with physical problems. Either you had a diagnosis or not.
I used to believe that if you had a diagnosis you should get a second opinion. If the second opinion is different than the first, you might want to get a third. A third opinion may break the tie. If the third opinion turns out to be a third opinion, you may be in more trouble than you thought. That is what I used to believe.
I used to believe that if you have a mental or physical diagnosis you should spend hours, if not days, searching for information on your disease and its treatment. I used to believe that if a medical professional, that you see face-to-face tells you not to believe anything you read on the Internet, that you shouldn’t believe them. I don’t mean you should not believe what such a person says is wrong with you is wrong. You just shouldn’t believe what they have to say about the Internet.
I used to believe if you had a diagnosis, you may need to work on accepting that fact. You may need to accept that you may need to pay for expensive and sometimes unpleasant treatments. You may need to work on accepting that as a sick person you are not well.
I used to believe that as a sick person you need to be careful about feeling too good. If you feel too good, you might forget that you are sick and fail to remember your need for treatment.
I used to believe that being sick had its advantages.
For instance when asked, “How are you?” you have something interesting to say. You might find that you now can have membership in some online and face-to-face support groups devoted to your disease. This can be a way to make some new friends.
Knowing what is wrong with you can liberate you from thoughts that you were lazy, stupid, a whiner or somehow to blame for your mental or physical complaints.
You may find that it is meaningful to have hope that you are one medical professional away from a cure to your problem, or one book away or one social media post way. You might find it meaningful to donate to research in the hope that one day a cure may be found for what is ailing you.
I have made such donations. I even got a baseball cap and a tee shirt with my disease on it. My Parkinson’s disease, that is. I don’t want to be seen in anything that might lead others to think that I am crazy or contagious.
I’ve only worn the tee shirt when I have entered road runs. I thought of myself as helping to create awareness of the disease by wearing my tee shirt. I don’t want people to be aware that I have the disease, unless I know them well, or unless they ask me about my shirt.
I wear the hat quite a bit. I like the way it looks. I never liked a sports team well enough to wear their hat. I’ve worn hats that have corporate logos on them, but always wished that they didn’t. I always thought that I gave enough to the corporation for the hat and shouldn’t have to give them free advertising as well.
My Parkinson’s hat is different. I’ve always thought that Michael J. Fox and Muhammad Ali were cool. I’ll probably never star in a movie or ”float like a butterfly and sting like a bee,” but I can wear my hat with the big letter “P” on it and tell myself that it is to remind me to have the positive attitude that Muhammad Ali had before he died and Michael J. Fox still has, about the disease we have in common.
I have found that there is a big downside, to identifying with my diseases. I keep checking to see how bad they are. Checking on how well the treatments are working. Checking more than I need to.
When I am feeling really good sometimes, I have thoughts that I should always remember that my feeling good won’t last long, because after all I am sick.
When I was first diagnosed with Parkinson’s Disease, I reached out to a female social worker because another social worker, that I used to work with, suggested I do so. I was reluctant to make that call, because I didn’t want to hear another version of “you poor dear, good luck with that, I heard of a guy with Parkinson’s disease who is 100 years old and still plays the violin.”When I called, that’s not what I got. I got, “Sorry to hear that, now go and kick Parkinson’s disease’s ass.”
This “kick it in the ass” attitude recommendation sounded more like something a man would say. It was along the lines of “man up,” “take control,” it applied stereotypical male-like responses to problems. It was different than the “you can’t help it you are sick” approach.
The word for a sick person getting medical help is “patient”. Patient comes from the same root word as “passive.” A good patient understands that people who know more than they do about their diseases may direct that very unpleasant things may need to be done for their longer term benefit. A good patient overrides their fear responses when it comes to taking their medicine and patiently does what they are told, even if it doesn’t feel good or make them feel much better.
A problem with being passive when it comes to disease is that your disease can become a big part of your identity as a person.
You may even become threatened by any sense of loss of that identity. You may assume that because of your maladies you can’t do certain things, or that you can’t do certain things without help. You may come to believe that you can no longer help others the way you once did, because you have been transferred from the role of healthy helper to the role of sick person who needs help.
I am not going to bore you with all the details of the things I’ve done to help me help myself with my physical and mental problems. I will be general. In general I have come to identify less with my problems and more with practices that help them.
With these practices, I try to think of them as being not means to the end of improving my problems, but as things that I want to do, because I like doing them.
I engage in vigorous exercise, meditate, and do household chores and other formerly “pain in the ass things” more mindfully. What used to be “shit I had to do, before I can have some fun,” has become what I want to do, as much as having fun.
I had very understandable fear that the physical and mental changes that fall under the diagnosis of Parkinson’s disease would rob me of my favorite recreational activities and would quickly lead to others needing to do for me that which I used to do for myself.
The early physical and mental symptoms that lead to my diagnosis of having a neurodegenerative disease, with no known cure, were interfering with my ability to run, go to a gym. hike, do art work, write and think as creatively as I once did. I needed to end my professional career as the stress of keeping up with my standards of competency were making my diseases worse and worse.
I thought I knew that it was time to “man down” and work on accepting the loss of my ability to help others and to do many of the things I loved to do.
I needed to learn how to slide gracefully into becoming a person that others could find meaning and satisfaction taking care of.
I thought that I needed to know that Parkinson’s disease was kicking my ass and I better start learning the wisdom of staying down when you know that things are only going to get worse no matter what you do. Why speed your demise, by fighting back.
I recall no magic moment when I decided to start fighting more instead of less. All I know is that presently, I am kicking ass. I get more exercise, more meditation, do more art work and discovered that I can write a little bit, because these are practices that I have determined I need to have to help me have less moments of dis-ease, for whatever reason.
If I was accomplished at any of these things and never made problems out of my discomforts, I would end this post with referring you to my website to try and sell you something. I have no such website and nothing to sell. I am not rich or famous or cured. I take medications, see doctors, search the Internet for answers and still like to wear the hat with the big “P” on it.
I still say “why me?” sometimes with self pity, but hardly ever anymore. More often, I am astonished that I have become grateful for my diseases, because without them I would have missed out on a whole lot of good practices.
I have no research to provide you a link to. No well known people to let you know inspired me to think “practices” when I start to identify with “problems.” You can Google that on your own if you are interested.
Don’t do anything stupid, but if there are practices that are affordable to you and you know have some acceptance as being helpful with your disease, try them.
In general, these are things that are frequently highly recommended for physically and mentally well people, too. Things like exercise, breath work, meditation, diet, art work, gratitude, prayer, service to others, all seem to be good for most people. If you have post traumatic stress concerns or hallucinations, you might want to be cautious with meditation.
My recommendation is that you don’t keep hopping from one practice to another, because the last one you tried didn’t work. Try to disassociate your practice from your disease. Do your practice, not because it will help your disease, but because you value the practice in and of itself. It is okay to be aware of how your problems are improving or going away.
Remember when I use the word “practice” I am not using it as in a “practice makes perfect,” sense or as in the the punchline to the old joke about someone seeking directions to Carnegie Hall, (Carnegie Hall is a prestigious music performance auditorium in New York City, USA and the joke is, “How Do you get to Carnegie Hall? Answer, Practice, practice, practice.) Again, don’t think much about how you practice is doing to improve your disease.
Traditional male values of taking personal responsibility, not complaining, staying focused on the needs of others, valuing independence and practicing stuff even when it is uncomfortable to do so, can serve a man well in finding and following meaningful practices.
When you can come to think that the reward you get from your practice, makes you grateful for the disease that motivated you to find and stick with a practice, you will know what I am writing about and you will know while I’m still writing.
Photo credit: Getty Images