Living with any on-going illness, the isolation a patient and immediate family may experience, not right away, but as time goes on, is quite profound and in some cases, shocking, but I guess this is human nature. Parkinson's is a prime example, I'm sad to say.
When someone who is normally healthy, suddenly falls ill or has an operation where they are expected to make a full and complete recovery, family and friends have no problem showing compassion and support, knowing this will be for a limited time. The recovering patient receives visits, phone calls, plastic containers filled with home cooked meals, flowers and chocolates etc. While very much appreciated, this is quite normal and expected behavior, demonstrating how much loved ones care.
However, the same cannot be said when a person is living with a long-term on-going disease such as Parkinson's, where there will be no recovery, only a slow decline. Needless to say, no one living with a long term illness expects or wants to be continually sent gifts which would quickly become very embarrassing. However, a phone call, e-mail or an occasional visit retaining the relationship would be very much welcomed.
Generally people don't want to hang around anyone chronically ill, and I can't say I blame them. I do understand, for someone in a poor state of health has limitations when it comes to socializing, which admittedly causes difficulty in maintaining friendships. Once diagnosed with a degenerative disease, life is never quite the same again. As fatigue plays a large part of many chronic illnesses, staying out late, burning the candle at both ends, dancing the night away or even simply staying up till midnight to see in the new year are often no longer possible. A lack of mobility means, day trips, sports activities, even a restaurant or any place that is not disabled friendly have to be taken into account, and when the activity is not suitable, an invitation understandably is not forthcoming.
Even someone like myself living with chronic disease, who remains positive, cheerful, doing all I can to be an advocate campaigning for a worthwhile cause I believe in, I have started to feel isolation to some degree over the last few years. My journey is too much for most to stand, realising the enormity of what lays ahead. I am not saying for one moment that people don't care, but to put it harshly, their overwhelming fear, discomfort and future long term burden (whether it be Parkinson's or another disease) is too much for them to stomach.
Sadly a common phenomenon, for self-preservation, a person makes the conscious decision, sometimes unconsciously, but either way, a decision is made to literally cut someone chronically ill out of their lives. Slowly phone calls, e-mails, and visits, get less and far and few between, until one day, the lack of contact is noticed, resulting in feeling like a burden that is dropped for it's too heavy to continue carrying.
Needless to say most people don't behave this way. Not everyone runs in the opposite direction upon hearing a bad prognosis. Thankfully there are those who stay close through thick and thin, and can always be counted on. Having loyal, steadfast people with empathy who have strength of character around, are a true blessing.