Some of the hardest things with these diseases is knowing what to say to our friends and loved ones. Sometimes words just can’t explain a lot of what is happening to us, so we tend to say nothing. At least I do anyway.
People’s expectations are that over time we must be closer to curing ourselves, getting better or at least making a lot of improvements. It seems a very hard concept that these diseases can, and may, get worse over time not better.
I can’t tell you all the times I get asked “so are you getting better yet?”
It generally means that most people still don’t understand the nature of Autoimmune diseases and they are unaware that many can progress or worsen over time and rapidly. Why? No one knows. Even specialists.
It is also the reason I try hard to avoid talking to people as I am now at a point where I don’t know the right way to say I am not getting better, things have progressed / worsened and I am struggling to manage and cope day by day. So I often take the easiest way and avoid talking completely.
I know that seems like a radical thing to do but I can’t handle the emotional and physical challenge of repeating this information over and over AND then address the flood of questions that follow. E.g. Why? Have you tried…? What did the doctor say? What do you eat? What do you do for exercise? Are you giving up or taking the wrong attitude? Is it something you are doing wrong?…. and so on.
Just trying to cope and manage the everyday challenges is my full time job. Yes. 24/7. Which often means I don’t have entertaining news to share or stories of adventures and fun filled drunken nights. It often doesn’t leave a lot to discuss and I am sure most people don’t want to hear what I am really doing day in and day out. So I have become a grateful listener.
I will try to post updates on Facebook and social media so I don’t have to repeat what is happening on the health front. But that isn’t always as effective as I would like. When people don’t respond I have always assumed that they have read my update and are aware of how things are going. I hope that’s the case anyway because it can be so painful typing out an update or tiring writing a message.
Most times when I speak on the phone or in a chat room I prefer not to talk about health issues at all. This may sound sad but it’s very true.
It’s not like a child where I can take joy and pleasure in discussing what it is doing and how it is progressing and growing. I don’t have any nice things to say about my illnesses apart from some powerful lessons that they have taught me. I mostly wish they were not in my life and that there was a cure. But this is not the case currently.
I try to talk about the weather, world issues, pets, hobbies and so forth but this can feel quite repetitive at times too. And there isn’t a lot to be discussed on those topics either.
It is quite hard when I realize that I can no longer share many happy events or milestones and that I must now become the eternal listener for the rest of my social life. In many ways it can feel like an unequal relationship when they are one sided. Thankfully people don’t mind at all that I now just listen and empathize with their life events. Most people won’t even seem to notice.
I have always liked to encourage and support my friends and loved ones. Thankfully that hasn’t changed and I just find myself doing more of it in conversations.
I also find conversations and updates about my health very difficult with my specialists and medical professionals. They also want me to tell them how much improve I am and how their treatment plan was successful. They don’t like hearing that things haven’t improved and I feel like they consider me to be not a good patient if I don’t respond as they want. They don’t know what to do when things get very complicated. Although they should know that these illnesses are complex, difficult to manage and progressive, they always seem to be surprised when I share the realities of living with several diseases all attacking me at the same time. Thankfully fellow sufferers (millions of us) understand and empathize.
Not responding to medications as they would like me to also leaves us in a difficult and awkward place. I have now got to the point where I am telling them what I would like to try next or which drug I would like to trial, but I am never sure whether this will help or not, I am really just hoping and doing my best to stay hopeful.
For all these reasons I tend not to talk on the phone that often and my husband has become the messenger for many of the updates with loved ones. However over the past ten years few people call now and many autoimmunes experience this as their reality. We must accept that relationships can be severely impacted by these diseases.
It is also true that I am unable to talk on the phone for long without becoming tired, confused, exhausted and in pain. I never tell people this because I am not sure how much they would understand these concepts. So a text message or a social media update have become my preferred forms of interaction until the rare day that I may have the energy and opportunity to speak or meet face to face. It is also worth mentioning that the rare time that I am physically able to meet socially, most people assume that I am like this all the time and I look and feel like this all the time. Nothing could be further from the truth. A simple coffee and catch up may take me days and weeks to recover from, so they are incredibly meaningful to me.
Every Autoimmune sufferer dreams of the day we are told that the cure has been found, but I also dream of the day that the rest of the world understands more and appreciates more what daily life can be like for autoimmunes so we don’t have to feel so isolated and disconnected from those we love and cherish.