I’ve been writing about the physical aspects of autoimmune disease lately. So I feel like it’s time to write about other types of struggles – just to switch it up.
And as you read this, please remember that my point of writing this is not to continually whine about what’s going on with me – or to imply that what is going on with me is all important. It’s to help me process my feelings and emotions, to give others insight into what it’s like to live with these issues and to maybe help someone else dealing with similar things to process their experiences.
I think most people just want to be left alone when they don’t feel good. When we have the flu, a killer headache, a fever or other type of “I don’t feel good” ailment, most of us just want to be left alone. A “don’t talk to me, don’t want me talk to you, I don’t care about idle chit-chat, and don’t ask me where your [whatever object you can’t find that I’m sure is right in front of your face but because you’re a 10 year-old boy, you’re incapable of seeing it for yourself] is” kind of “leave me alone” feeling.
That works fine in the short term. You hide in your room, snuggle under a blanket, watch some mindless TV and in a few days you feel better. Others generally understand this process (except children that insist that you are the only person on the planet that can solve their particular problem at that particular moment…they don’t quite get the “leave me alone” concept – but otherwise, most people get it!). We tend to cut each other slack when the sick person seems distant or withdrawn.
But what happens when that “I don’t feel good” period lasts for almost 3 years?
I have times that aren’t as bad as others, but there are large chunks of times – weeks and months at a time – when it’s a struggle to not want to just be left alone. I don’t feel like making much of an effort. I don’t feel like talking. And what’s on my mind, even if I was to talk, is what’s going on with me and I completely understand that other people have other things going on in their lives and no one wants to talk about what’s going on in mine all the time.
So combine the “I just want to be left alone” phenomenon with the understanding that no one wants to hear about what’s going on with me all the time and add that together with the struggles of invisible diseases (that I discussed in this earlier post), and what you end up with is isolation.
It’s like life is on pause for me and it’s moving on for everyone else and that life is leaving me behind. I don’t blame anyone. Relationships are two way streets and I know I haven’t held up my end. I haven’t shown as much interest as I should (or want to) in others and what’s going on in their lives. I haven’t reached out to others and invited them places or to do things. I haven’t hung out with friends like I used to. I completely understand that this isolation was my own doing. And on some level it’s easier to be left alone – in a strange way it’s what I want: to be left alone and not have to keep up appearances or pretend like everything is fine when I’m physically hurting or frustrated or anxious about what’s going on.
It’s very easy to say things like “you can’t let it stop your life” and “you have to keep on going” and “just ignore it and live your life.” And I probably would have thought those things before this all happened. But after 2 years of trying one medicine after another and then another 10 months of musical diagnoses — the entire time dealing with chronic pain, fatigue and neuropathy, it’s very very hard to do those things on a daily basis.
I feel like I haven’t been “normal” in almost 3 years. Yes, I can act “normal” – but not for very long. I can do it for a short period of time, but not consistently, day in and day out for almost 3 years.
I feel like I can’t show how I’m really feeling and what I’m really thinking – everyone would get tired of it, of hearing me whine, of hearing about my problems when they have their own.
So what’s the problem with the isolation? If I want to be left alone and can’t keep up the appearance of “being normal,” then why am I now unhappy with feeling isolated? Because I miss myself and part of what I miss about myself is my relationships with others. I miss how I was always willing to do things for others. I miss how close I felt to friends and my husband. I miss being invited places. I miss feeling like I had a social life. Instead I feel very distant and superficial. I recognize it, I understand how it happened, I want to back to normal…but yet I just can’t do it perpetually…not yet.