I hear the phrase “you just have to stay positive” or “be more positive” on a daily basis, and more than once.
Don’t get me wrong, I’m all for positivity and having hope in management, recovery and learning to love myself and live with this illness. I understand that it works for a lot of people.
I don’t believe, though, that it is as simple as just “thinking positively” and all of the problems suddenly disappear.
You may disagree.
I know this topic will spark some controversy…
But, there is a massive difference between staying positive, and being open and honest about Chronic Illness.
Lets face it.
Chronic Illness is ugly.
It brings a whirlwind of symptoms that attack your body, dramatic life changes, as well as emotional and mental changes for yourself and those around you.
I am yet to come across a person who is struck down with a mild flu or Gastro Virus, and is running around the room being thankful for getting sick and having a few days of low immunity.
So, why would you think that I would be jumping for joy every day with my illness? How am I any different to you? Do you think that I wanted any of this? How is it possible to remain positive about it every moment of the day?
It is a struggle, and I see no shame in being honest about it. I encourage you to write honest posts and express yourself freely about your feelings in regards to your illness and suffering.
Being honest about your feelings will help you accept the illness. It helps others understand, and it connects you to a community of sufferers.
You should not be ashamed to share your true emotions. In order to promote awareness for our diseases, we must talk about our bad experiences, as well as the good.
I have bad days.
I have really bad days.
Occasionally, I have good days.
I am not afraid to write or speak about them, because once my feelings are out in front of me, I can move forward. Writing is a release. Without it, I would be in denial. Things for me will never be the same. I may never have the life I did before, and I may never have a formal diagnosis BUT what I do have is a chance to have a great story.
Telling someone to “stay positive” during this rollercoaster period, is not as great advice as you would think.
Does positivity miraculously cure my illness?
Friends and family are overly focused on being positive. This is not a bad thing, but it is definitely a lot of pressure on the suffering to feel happy and content with their current situation.
Chronic Illness is not a walk in the park, and the world needs to accept that.
It also isn’t all about the symptoms. It is about how our families are effected, how our lives are effected, acceptance of the change and our new bodies.
How is someone meant to have positive thoughts when we receive insulting commentary like, “how are you exhausted when you don’t do anything all day?”
I used to be what society considers to be normal – going on roadtrips, shopping until my legs ached, working double shifts, going for walks, seeing friends, driving the streets…
Now I can barely walk around a shopping centre or stand for long enough to make a cup of tea…
But let me tell you something.
When I DO manage to achieve these things that you consider tiny, it takes a lot out of me. I try and do little things every day, and when I do, I am incredibly proud of myself.
I didn’t ask for any of this.
I don’t enjoy being on crappy Government payments, or the days spent in Doctor’s Clinics. I don’t enjoy being ill every day, and missing out on living.
I am judged.
I am judged for being on Government Payment.
I am judged for spending my days in appointments, with no answers.
I am judged for trying, despite having no answers.
I am judged for being ill.
I am judged for not being able to be the way you would expect me to be.
Being positive all of the time when dealing with illness, and especially an Invisible Chronic Illness, is unrealistic. In fact, being excessively upbeat is often linked with being in denial. Keeping an optimistic outlook can be incredibly tough, because NEWFLASH, chronic illness is terrifying. The uncertainty is terrifying and forces us to deal with a lack of control, surrendering to Doctors, trusting random people with our bodies, and the sad reality that life is finite.
This post is not me telling you to be negative every day and give up. What I recommend is finding a balance between the feelings of despair, and feelings of optimism. Do the best that you can to control what you are able to – decisions about which Specialists to see, what treatments you wish to try, a gameplan of your own, small goals each day. Find little things that you are thankful for, rather than constant positivity.
And most importantly, open up to family or friends who can tolerate hearing about ALL kinds of feelings. Do not put on a facade around people, or the blogging community. It is naive to think that we will hear you at your best all of the time.
You are allowed to say that this isn’t fair, that life is now unbearable, that you are confused, lost and terrified. And, if nobody wants to listen, I will listen. Because, I know what all of this feels like… The good and the bad. I won’t tell you to “stay positive”, but I will tell you to stay.
You have a story to tell… a novel of life, love, loss, struggle, acceptance and change.
I encourage you to tell your story; read it aloud, as I will mine.
Real life is no fairytale.