I am a Writer for ‘Parkinson’s Road’ global support community.
“Life seems sometimes like nothing more than a series of losses, from beginning to end. That’s the given. How you respond to those losses, what you make of what’s left, that’s the part you have to make up as you go.” – Katharine Weber.
One of the things that many people may not realise, is that when you are diagnosed with a life changing illness, your life really does change. Sounds obvious? Wrong! You may be surprised to learn that it is the common experience of people living with chronic illness, progressive disease or disability that, if the symptoms are not visible, onlookers expect that life is just ticking along as either it ‘once did’ before illness or as it ‘should be’ given that everything looks alright. It’s okay, most of these judgements are made in the split second and humans are fallible where split second judgements are made. I have learnt to forgive such presumptions, myself, rather than take offence.
That said, the expectations of people making the presumptions can have an impact. It may be that, for some living with hidden illness, the tendency becomes that of hiding the reality of how difficult things can be or are. This is where we start to find the “I’m fine.” and “Oh, it’s okay, everything is alright.” type of statements coming from people who really want to say “Actually, things are really difficult right now.” As a person with Parkinson’s, myself, I make a point of stating what is honest and genuine, though I will often hold back from going into any significant detail about any difficulty. It depends who I am talking with.
Diagnosis of disease, illness or disability can represent more than just the formal verification of illness being present; it represents loss. Loss of what was. Loss of what could be. This is so for the person with Parkinson’s as it is also for those close to them. It also represents the beginning of change and, as I’m sure most people will have learnt, most change comes with loss, just as it may also come with some gains.
I believe that loss is a subject that appears to be under-discussed by the medical profession, when they meet with their patients to assess how the person is progressing versus the progression of the disease or illness. In my experience, there is good focus on ‘coming to terms with’ and ‘acceptance of’, in the questions posed to me by my medical support team, but very little reflective questioning on how I have felt about losing ‘what was’ or ‘what I thought could have been’.
I recently asked members of Parkinson’s Road online support community about what they had to cease/give up since the onset of Parkinson’s. I was unsurprised to find that many had made difficult but necessary decisions to give up careers, to move out of beloved family homes in order to live more simply in flats/apartments or bungalows, some had given up pets or farm animals and farming, others had given up activities such as sports or hobbies and some had given up the basic necessities of healthy living, such as walking/regular movement, cooking and socialising due to no longer being able to do these things well or safely. Some had given up friendships that were tied to their former activities; such as friends who they worked out with/played sports with or went places with.
This leads us onto another aspect of life that many people with Parkinson’s describe as having been affected; that of friendships and relationships.
Some people find that the dynamic within their friendships change as Parkinson’s progresses. Friends can become uncomfortable about watching the progression and the physical changes suffered by their friends with Parkinson’s and so withdraw while others seem to be uncomfortable about talking about/asking questions of their friend with Parkinson’s, no matter how willing the person with Parkinson’s seems to openly share what they are living through. For many, it seems that Parkinson’s can become ‘the elephant in the room’. This is sad but all too common. Sometimes, the person with Parkinson’s cannot face openly discussing their illness or the reality of daily life and so they withdraw before even giving their friends a chance.
The responsibility for resolving this does not sit with the friend of the person with Parkinson’s. Technically, I believe it sits with both the person with Parkinson’s and the friend; all relationships should be two-way, right? Each person has a share of responsibility. That said, I would state that it is fair to remember that our friends will not have had the same depth of process of coming to terms with our diagnosis, as we have had. They will not have done the, often, years of thinking about it, the research online, the questioning and the exploration we will have done. Our friends are, therefore, behind us in our understanding and in their knowledge about what our diagnosis means to us. They may even have experienced us for too long doing the “I’m fine.” response. We may have denied them, inadvertently, the opportunity to come on this journey with us. So, please be cautious before you judge your friend harshly. Are you being fair? My advice; take time, re-evaluate, open discussions up, set a few boundaries and take the ‘elephant’ out of the room.
I count myself as incredibly lucky. Many of my friends are just comfortable enough to ask and to talk openly with me. Some, simply because that is who they are but others because illness/disease has touched their families, others because they work in the caring professions and some just because they are intuitive and kind. Besides, they pretty much all have a read of my Blog every so often and they get to read a lot of my updates and thoughts. Perhaps you might consider starting a Blog, yourself, as a means to improve how you communicate your life experience to those in your life?
In terms of communication, there can be a great deal of difficulty in having some of the necessary conversations with those closest to us. Depending on the progression stage of Parkinson’s, different conversations will be necessary. Something I notice, in co-running Parkinson’s Road, is that the subject of renal system and bowel health, sexual relationships and end of life care are very rarely discussed. I think this is the same in all walks of life, so no different within the Parkinson’s community. Yet, upon reflection, these are some of the fundamentals of living life; the body’s processes, intimacy, sexual health, relationships and death. From how one is experiencing toileting, through to whether anyone is experiencing sexual dysfunction and on to whether a person wishes to be resuscitated, cremated, buried or even the subject of will writing euthanasia/end of life choice. Let’s throw in religion, culture and beliefs while we are at it. It’s all there in practice, but how much more would individuals, families and friends benefit from having some of the uncomfortable discussions?
This brings me to the subject of community. What I see in the wonderful online support group that is Parkinson’s Road, is community. Some of these difficult/less comfortable discussions do take place, albeit less often, but what is evident, above all, is that when any person within the community is in difficulty, there is an outpouring of genuine, heartfelt love, support and friendship. When one person struggles in some way or faces something difficult, then the many are affected, too.
If anyone doubts the future of humanity, I have to say that my experience of seeing the kindness and goodness between people from so many different backgrounds fills me with hope for the future of humanity. If we are able to set aside the things that usually divide us in the real world, while we form a shared community online, then we can do the same in the real world, too. For all its faults, the internet is bringing people closer together and opening new doorways that allow the caring side of humanity to flourish. For all of the darkness, there is much more light in the world.
Keep talking. Keep sharing. Have the difficult and uncomfortable discussions. Don’t let your friendships dwindle. It only takes one friend, in a friendship, to take the lead. There is much loss when a person faces chronic health difficulties. When people pull together, that loss can be reduced. Where possible, join a supportive community online, as well as in the real world. Let your medical support team know about what is changing in your life.
If you have thoughts on any of this, please do leave a comment below to share your own experience.
(C) Dean Parsons. May 2018.