“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 everything is alright because you look alright.

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.

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 review how the person is progressing with their 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 people that I know with Parkinson’s about what they had to cease/give up since the onset of Parkinson’s.  I was not surprised to find that many had made difficult but necessary decisions to give up careers or 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 people 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.  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.  Some of these difficult/less comfortable discussions do take place, albeit less often.  What is evident, above all, is that when any person within a supportive 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.

4 Responses

  1. I think one of the hardest things in a mixed support group is disussing sexual relationships. PD is hard on both the pwp and the partner. Discussing intimacy is difficult at best. I would not be comfortable discussing in a mixed group. Say, I’m a pwp female partner to a male, I, would want to talk with other women. If I’m a pwp husband, vice versa. If I was in a same sex relationship, again, I would want to discuss with peers. So, that’s at least four groups of partners.
    I’m happy to be a member of both the Parkinson’s Road and Caretakers on said road. Wonderful people! Great admins!
    Thanks for this post <3.

    • That is a good point. The good news is that support groups open the door for people in similar situations to connect and form friendships. Many members give each other support outside of the main group, too, as friendships develop. Also, the group Admins are happy to provide discreet support outside of the main group discussion. If you need such support, have a go at building the friendships or asking the Admins. It will help. Best wishes. Thanks for reading and commenting.

  2. Dean, what a well thought out post. The content of your post is absolutely something that needs to be shared within the Parkinson’s community. I find it very interesting reading your post this evening as earlier today I started an activity on Parkinson’s Road titled “ARE WE DOING EVERYTHING WE CAN TO HELP EACH OTHER?” and will hopefully continue each week until we have exhausted what members consider Parkinson’s problems and this will include the subjects of the renal system, bowel health, sexual relationships and end of life care are very rarely discussed. I see that Margaret is doing some research on issues of increased symptoms related to a woman’s cycle and menopause. I’m sure she will have some great input with respect to women health in the activity.

    I fully agree when you say keep talking, Keep sharing and have those difficult, uncomfortable discussions. I find it a great pleasure to read your articles. The next time I’m in England, we should meet somewhere and share a cup of tea.

    • Thank you Phil and it is good to see that you are helping others to talk about the more personal aspects of their experiences. Thank you for reading and for commenting. Kind regards, Dean.

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