A.R.D. warrior has a couple of very insightful and truly wonderful posts about fighting the guilt that the invisibly ill feel and why it’s OK, not to be OK. When I happened upon these, I could have really used a heavy dose of the major take-home points from those articles:
- You don’t have to prove to others that your sickness is real or what it does to you.
- You are not alone in feeling guilty and it is possible to reduce its impact on you.
- You cannot be OK all of the time – just the nature of the beast – and that is alright!
- Staying positive about your present and future doesn’t mean you need to kid yourself that you do not have a chronic illness to struggle with. There is a balance to be struck between being positive regarding your prospects and simply being honest.
Reading the two articles caused a flood of thoughts in my brain. I cannot thank ardwarrior enough for putting in words so much of what goes on in my head! So much of what the articles talked about applies to me, that I felt it warranted a sincere discussion.
I am notoriously incapable of admitting when I am not doing so hot, especially to other people. I used to try to fool myself the same way I try to fool other people, but I am getting better at that. I am getting better at acknowledging when I don’t feel so good, and taking steps to stop myself from getting worse. Sometimes they work, sometimes they don’t. And when they don’t, I try to be honest regarding my feelings of disappointment and guilt. Sometimes I cannot help but let all the guards down, break down and feel sorry for myself, admit to wanting to give it all up (whatever “it” really is), and just let my husband hold me (gently) until I feel better. BUT . . . I still cannot come close to admitting to others how I truly feel. I could be in the midst of a massive flare, and it could be obvious to everybody under the sun that I might be ready to crawl into a pre-dug grave; but if someone asked if I was OK (with all good intentions and never in mockery, I might add), I have an automatic speaker that comes on through my mouth that says “I’m OK.” The other person obviously realizes it’s a lie, and either withdraws from further questioning or asks if I’m sure. If they go the second route, I either say “Yeah I’m fine” and rapidly change the topic/awkwardly pretend I am occupied by something else to stay and talk, or say something on the lines of “just tired.”
I know this is a personality trait that alienates people. They are trying to be friendly and kind, and I am rejecting their advances to reach out to me. I am putting myself in an isolation chamber when I need not. So then why do I do it? Why do I build a wall around me and refuse to let others in? Why am I so resistant to reaching out for help, or even just accepting the help that is offered, when I am often the first to reach out to others if they are ever in need?
I suppose part of the truth is that I have been burned before. I have reached out for help to have only found myself ridiculed. But the whole truth is a lot more complicated than that. I am usually good enough about living behind a public mask, so if you had to ask me if I was doing OK, I am so far from doing OK that I wouldn’t even know where to begin. I suppose an easy answer is that I am in a flare. But few people understand what that 5-letter word entails. (If you are lucky enough to not know it first hand, I touch on it very briefly on a previous blog post about what fibromyalgia feels like.) Even if they did, they would probably just feel awkward and not really know what to say or do, and I hate putting people in that kind of a position. I am also not quite ready for others to feel sorry for me, though I allow myself that luxury every once in a while. Sometimes I feel guilty – pure and simple – to admit to being miserable when I am so young and have it so good compared to many others. I feel like I have no right to complain. Finally, I think I am just plain ol’ afraid of what might happen if I completely give into admitting the misery every time I feel it. Not admitting wretchedness openly is my way of keeping up a face that may not be entirely true; but at any rate, it gives me the semblance of having some power and control over myself. I am afraid of what it would do to my soul if I gave up that last shred of power. (Feeling a loss of control over my own self due to the unpredictable nature of my condition has been a big issue with me, and I have talked about it a little here as well.)
Another aspect of this issue worth touching upon is the idea (that is backed by science) that sometimes distraction does help to reduce how much physical pain you feel. The pain is kind of like a baby throwing a tantrum. The more attention you give to it, the more demanding it becomes. When you are putting up a face, you are forced to focus on something other than your pain and misery, which may not make it go away but can certainly reduce how much it consumes you. For those of us with chronic illnesses, we know the pain will never completely go away! So all we can really do is minimize how much effect it has on us mentally and emotionally.
As an example, I was feeling on the poorer side of my new normal on my birthday some weeks ago. I hated to admit this to anybody, even to myself to an extent, especially on a day when everyone was obviously trying to be nice and make me feel special. So I faked it for the most part, and was extremely touched by everybody’s gestures. I was glad to have not let others down when they were trying to do something nice for me (another one of my big “things”). But, as ardwarrior says, there is a balance to be struck here. And I tried as much as possible to rest whenever I could and not push myself too hard. I treated myself well, and accepted support (though only from a select few) when I felt I needed it. All in all, to be honest, I think I managed to have a pretty good day! And I was proud of myself for it too!
The whole event gave me a mental boost that I am MORE than my illness. I am not a fibromyalgiac (this is where I coined the term, if you are curious). I am a biologist, an artist, an amateur photographer, an avid reader, who also enjoys writing (mostly prose now, but once upon a time I used to write poetry), takes an interest in archery, and was probably a fish in a past life . . . AND, who also happens to suffer from fibromyalgia. I may not have the level of energy that I once did, or be able to do all that I once dreamed of. But I am still capable of doing the things I love – though in a different way, and I still need to find that way. In an odd way, developing fibromyalgia has actually enhanced me as a person, but I will talk more about that in a separate post.
So . . . have I found the balance? Not sure, hopefully a little.