I have brushed on this before in various blogs. However I momentarily feel the need to write about it in detail. This particular blog piece is not intended towards act as criticism to anyone, nor do I want anyone to feel offended.
The other day I had a Skype chat. I wasn’t feeling particularly well after my follow up, though it only really got hold the day after, the information of the appointment having sunk in. I was venting my feelings and frustrations. In a way, I was left feeling more frustrated by it.
In the past, whenever I tried talking about my feelings regarding my illness to anyone most of the time I heard the most common of cliché answers. They go along the lines of . ‘Just think, it has been a lot worse in the past‘ or ‘Look at the positive side, you can breath‘ or ‘You should be grateful for your state of health. There are so many people who are far worse off than you‘ or my personal all time non-favourite ‘Everything is going to get better, you just have to be patient.’
Dealing with a chronic illness on a day to day basis, those suffering have a pretty high verbal pain thresh hold. Basically, you have two options:
a) you can surrender to self-pity and start extracting all the negative out of the situation your in
b) acknowledge the fact you have what you have, learn about it and how to live with it and try to focus on the good life you have despite it.
Personally I think a) will only turn you into this bitter person, looking on in jealousy at all the “good things” everyone else around you has and why oh why do you have to be the one to deal with all of life’s strife. Everyone else seems to have it so easy, the grass is greener and you are to be pittied.
For me, and many people I know and have come to know through this, we have chosen b). Why? Because there is too damn much in my life that is good. Leaving aside the typical frustrating parts of day-to-day life, I have first and foremostly a beautiful child (admittedly driving me bonkers at the moment but I guess that’s just what six year olds are supposed to do), I have a fulfilling if yet demanding profession, friends and family who love me and who I love and yes, in general, good health.
From very early on I have decided not to let ISS rule my life. Ok, in fairness, for the longest time I had no clue what it was I was dealing with other than an airway whose lining for some reason decided to grow to the extent of me needing constant medical supervision and surgery. I tried to go about life as normal as possible, not let minor or major operations knock me down, hard as it was. However, entwined with that was the fact that I almost always tried to hide my frustration or vulnerability with this when it did surface, because most people were used to me being positive which, in those cases was me putting up a front.
I have been seeing a therapist for a good six months now and part of what I am working on and dealing with is this damn ISS. During our work together I have learned it is ok to feel angry, upset, vulnerable, frustrated, at a loss, alone and tired of it. Because of these cliché answers, in the past, I have refrained from talking about these emotions.
I have written a blog about strength before. And yes, anyone with a chronic disease has an enormous amount of strength inside, both physically but more importantly mentally. By that I don’t intend for a minute to put us on the proverbial pedistal, bringing across an ‘oh look at how much better we deal with life‘. The fact remains that because we have to deal with life in a different matter to anyone who is disease-free, we need to access completely different resources.
This ability however does not mean that we don’t feel scared. Or angry. Or vulnerable, or all these emotions that come with carrying such apackage. On the odd occasion we just need to vent, like every one else venting about their crappy job or their annoying spouse or whatever else.
Now, I can appreciate that anyone who receives the brunt of this venting will probably feel pretty helpless. I mean, what can you actually say or do? You see a friend or loved one in front of you, talking about the hardships they have to face with whatever it is they are dealing with and all you probably want to do is reach out to that person. Most people do this verbally with said clichés.
Can I tell you a secret? There is nothing more frustrating for us than hearing these things over and over and over again. We are aware of it all. I am terribly grateful that my airway is stable at the moment. That I can breath. Nevertheless, I feel frustrated by the fact that there is now another figure to this equation, one I don’t want. And as I have written in my last blog, I ask myself when there will be an end to this. When can I go back to my normal life, a life that isn’t dictated by medical appointments, medication and the constant worry of ‘what else‘.
We are told we have to be understanding towards those that don’t know about what it is we deal with. And yes, that is true. And for me personally, I try to be and think I am successful most of the time. But, at the same time I wonder, when will someone be understanding towards my frustration about it all? Why is it that I have to understand that, but others get the free ticket about feeling angry when all they try and do is be supportive?
All I, we, want most of the time when we feel this frustration is for someone to be there. Not to say great things to us, not feel the need to make us feel better. It is really quite simple. Just……. listen. A hug will sometimes go down well. But there is no need in trying to fix that state of emotion when it does arise. Because we know how to deal with it. We deal with it every day. However sometimes, just sometimes, it gets a little bit to much. And all we want to do is talk, vent and most of all, have our feelings acknowledged and be allowed to have them. There is nothing more you have to do other than to be there and let us be. Don’t feel helpless, because that presence is worth more than a million words.