It is quite strange to me that at this point of my life I am taking stock of my relationships and my understanding of what friendships are in order to try and build a plan for my future social interactions. I know it seems to be later in life but I am determined to draw some meaning and direction from my past experiences and use them to make the most of my future.

In truth I have always had a difficult history when it comes to understanding friendships and Relationships and I seem to have either not invested enough (been too introverted or focused on work / studies) or I have been guilty of giving and investing way too much of my time and resources! In those cases I have given seemingly endless amounts of time, energy and money only to be left empty handed and feeling taken for granted… its been such a puzzle for me to make sense of at times but I believe I have always done my best to try and forge healthy and long lasting relationships despite whatever has happened along the way. It is all useful information right?!

Since becoming this ill things definitely changed quickly and profoundly with many people drifting out of my life. While I have struggled to do even simple things around the house it became so much harder to do things with others: this makes me very undesirable to most people.

Many healthier people find it particularly difficult to understand this aspect of chronic life and most often they will cling to the picture in their minds of what you should be able to do for them as opposed to what you can now physically do for them and often they will want you to behave as you once did. They want you to be able to plan outings in advance and be available when needed (like you once did) however when you can longer meet these expectations they will often retaliate by growing very distant as you have become more and more unreliable to them.

Slowly invitations have dropped off and calls/texts/emails dwindle away. The saddest part is that it is through no fault of our own, but we will still pay the very real price for the worlds lack of appreciation and understanding. During conversations if we mention (or post) how we are doing healthwise the rest of the world tries to label you a whiner or attention seeker when you are merely trying to explain your circumstances and trying to educate them about your realities.

Often sufferers will have to pay people to be companions and to treat them as a real friend should.

Flashback:

Years ago I was speaking to my mother on the phone as we spoke regularly. I was always mystified by how much of a hermit she had become. She rarely went into town, she never socialized and no one visited her. She often went weeks on end without seeing anyone, despite the fact she could still drive, she was relatively healthy and she lived in a town of only a few thousand people that she knew quite well.

What puzzled me more was that she didn’t seem to care that she was mostly alone and she said she never missed company nor wanted to socialize… She was largely content on her own and I was speechless.

Over the years my mother and I had discussed my difficulties with friendships on several occasions and I had disclosed to her that I couldn’t understand human behaviors when I had done my best to be very loyal to people and very generous. She confided to me that “…I should not expect people to behave as I do and that a strong friendship takes many years and many many difficulties to develop….” She reminded me that true friendships were much less common and you could count them all on less than one hand; if you were lucky!

She was right.

She also reminded me that a good relationship started as a cautious relationship and should progress carefully and with strong boundaries.

We are currently taking care of our elderly neighbour and whilst we are checking in on her daily and helping her nurse her injured shoulder I found myself suddenly asking who could I call if I desperately needed help? I was stunned when I realized my answer and I And that it would be only my husband. Just one person after all these years.

I have since decided that I must look more deeply at all my current relationships, friendships and acquaintances.

I realize that as human beings we have several levels of relationships and amongst those levels I have a lot of acquaintances which I talk to if the occasion presented itself. There are hundreds of people that I consider to be acquaintances in fact! You might send them a birthday greeting (if remembered) or even speak once a year. Maybe.

There are also colleague relationships which we share with our work mates. This is more of a comrade relationship and tends to be confined to the work place. Since many chronically ill have been forced out of their careers it means that this social aspect is gone too. Sadly, It is certainly true in my case.

There has also been the explosion of internet friendships which can be both rewarding and yet also highly misleading. Rewarding because you can often meet people with similar interests or challenges and can it be an easier form of interaction for the sick and healthy alike. Chronically ill people however rely heavily on this form as often we simply can not physically meet face to face. It can be convenient and accessible but it can also be deceptive too.

Often we can invest emotions and time into our online relationships but we can also be misled because we miss out on all the visual and physical cues we get from closer proximity with others. It is also much more likely to be lied to by other people as you have no way of truly knowing what takes place on the other side of that screen.

Also… are we really that happy to exchange the closeness we get from human interactions for a lifeless and cold computer screen? Really?

I find that a Facebook message or social media validation does little to truly comfort us or support us when we are struggling. Hashtag responses and likes doesn’t replace a meaningful relationship for me any longer. I realized that out of the thousands of friends and followers I may have none of those people really know me or have any idea who I truly am.

It’s time to get real!

Despite being a handy and convenient form of keeping in touch social media no longer has the attraction it once held for me as it lacks more than it supplies. Don’t get me wrong, it’s still an enjoyable and easy way to share a picture of your food or see someone’s holiday or children but it doesn’t hold much beyond that and I am always reminded that it can also be quite toxic when we can be overly judged and competitive in our online environments.

The challenge for me now is to work out how to balance meaningful relationships with difficult physical hurdles?

I imagine that many other chronically ill and disabled people have this same painful dilemma and I dearly wish it were not the case. How do we build close and rewarding bonds with others when we can scarcely walk to the mailbox or brush our own hair?!

I have decided to take a step back and see who really wants to interact outside of Facebook and twitter. Who wants to take the time needed to get to know and understand each other? What existing friends / loved ones want to work at understanding and appreciating how to maintain relationships with someone who has health and physical challenges?

…Time will tell.

It isn’t easy to do such a thing as I am currently contemplating, especially when you realize that the outcome might be that you are more alone than you may have once thought, but I also have to believe that it is ultimately a healthier thing to do.

Like when you realize that a friendship or loved one has drifted away and you no longer have anything in common and you have outgrown each other, I find myself in a similar place as the realities of accepting who is really connected and who isn’t comes into focus.

However, I also know how brave I have had to be in the past, how much emotional and physical pain I have managed and coped with in the past and I now believe (like my mother) I am ready to embrace the realities of whatever lies ahead.

I will be doing everything I must to assure myself that I am still a worthy person and if it transpires that I become more alone than I must also believe that I will be in good company!

My heart and thoughts go out to all my fellow Autoimmunes who have been in this place and have navigated these difficult waters. It’s incredibly hard and emotionally straining. We want to have relationships who love us and treasure is no matter how our bodies behave. It also takes a lot of time and energy to grow such bonds, but these things are also things that we have so little of.

I know of many healthy people who feel isolated and depressed by their relationships despite being able to move around freely and having very few physical hurdles, so how are Autoimmunes supposed to cope?!

…So frustrating.

I am reminded of the old cliche my mother shared and it still stands true… ‘It is better to have one true friend than thousands of fake ones.’

That will have to be a number I can live with and treasure if necessary… We will see.

Gentle hugs,

Trish.