There are a few times in life that the average person doesn’t know what they can or should say to someone. Words just don’t seem to be enough and they don’t adequately explain how you are feeling at a time in our lives. For example, when someone we love dies, when someone we care about is going through a very difficult time and so forth. Not knowing what to say occurs primarily because the words don’t seem to exist to describe what you are thinking and feeling at the same that time and it just gets jumbled up.

These situations happen to me all the time since my health worsened over a decade ago.

So many times I find myself unable to explain to a friend, loved one or doctor all that is happening to me at any given time, despite them asking me to describe it. So much is happening at once that it can become indescribable! Most people have experience of some things for which they try to compare and orientate themselves with but they are truly able to understand the inadequacy of their yard stick.

It’s not their fault.

It can at times even feel insulting if someone tries to compare something with another thing that is vastly different. For example, I recall how many times people will compare their fatigue to that of the chronically ill or autoimmune. It is like someone comparing the ocean to a swimming pool. Yes they are both a body of water, but they are hugely different. Anyone who has never seen the ocean or experienced the ocean will always refer back to the swimming pool for their reference point.

And this is the problem.

Last night I was asked by a well meaning friend to tell them all that was happening to me and what I was going through. The enormity of the task overwhelmed me so I declined. It would be too hard for me to describe and too difficult for them to try to understand. So I choose to spare people the difficult task of even trying to understand. This is especially true if I doubt the sincerity of their request, and sadly their are many that ask who don’t really want to understand but to simply belittle or downplay.

I remember a woman once told me “I know what pain is because I gave birth!” I am sure she did endure terrible pain while giving birth to her child, I have never tried to convince anyone that they don’t have their own definition or experience. However no woman I have ever met has had to give birth while feeling like their joints are on fire, their vision has gone, they can’t move their arms, they haven’t slept for a month and they have lost their jobs and will never work again!

Although my days are a battle, the truth is the battle is constantly shifting and changing. As more and more parts of my body and system has given way to the effects and damage that my own immune system has done to me, more and more things are added to what I must contend with. It is progressing and changing with every year. I can never get acquainted with what is happening before something flips and changes again.

What started many years ago with sore joints, fevers, aching, tiredness, headaches, occasional vision issues, fatigue, malaise, pain, memory issues, blurred vision, numbness, bowel pains, nausea etc is now effecting every area of my body from my hands, to my feet, from my heart Rhythm to my breathing. Everywhere. At any time of the day or night.

Being able to simply walk to the bathroom, go for a drive with my husband and sit in my garden is an absolute achievement for me! Doing my own hair and makeup and going somewhere is something I must remember all year. Laughing and feeling normal again is both beautiful and a sad reminder of the life I once had.

Aside from the physical pain and difficulties people like me endure we also have the additional pain and struggle of the emotional battles we are fighting. Everything from the grief of losing our former selves, to the cruel denial of the world for what we go through. The depressing effects that pain, frustration, anger, grief, futility and loss has to the embarrassing, agonising, insulting, annoying, callous and ridiculous assumptions that the world makes about us… And everything in between.

Sometimes even our own fellow chronic fighters can turn on us and belittle us by attempting to be more virtuous, more self righteous and doling out ableist rhetoric and virtue signalling to those who have already endured enough. It is I’m comprehensible at times. We often find ourselves retreating inside and away from the world only to add loneliness and isolation to the list of challenges we endure.

Some of the worst things that these illnesses do are not simply to our bodies, lives and futures but also what it does to our connections, our relationships, our friendships and our bonds. It can make strangers of our closest attachments and put such distance between the most loving relationships. Watching a relationship break down over changed circumstances, lack of understanding and difficult expectations is truly tragic but has become the norm for so many of my fellow Autoimmunes and including myself.

What can I say about it all? What can I tell the people I love, the ones I care about and the rest of the world? I really don’t know what to say most of the time… but I keep trying.

Gentle hugs,

Trish