Someone close recently asked me if I get scared…yes it is scary. Yes I scare a lot, just that I don’t show it. People don’t know how serious or scary it can get because I never really portray it. I’m always cracking jokes of my pelvic pain or fibromyalgia. Sometimes I even laugh my heart out and at that moment I should be cringing in pain. Here is the thing, I just cannot afford to be all gloomy and depressed at all times. Life has to go on and being a bubbly human being I have to jump on the life bandwagon even with my heavy burden. If all I ever talked about was pain and depressive material, I would not only scare everyone around me but I would drag those close to me down, so I choose to keep it to myself.
It is very scary. If you are used to a carefree life and several doctors tells you that you have to live with this till ‘kingdom come’ it tends to scare even the hardest of us all. You keep thinking ‘does this pain ever reduce?’ better yet, ‘does it ever fully end?’ When your doctor prescribes a whole cocktail of meds just to help you feel ‘normal’ that is scary right there…not only are you a pill popper of very addictive meds, you now have to deal with the lesser evil of side effects and you keep thinking, ‘what happens to my kidneys after all this consumption?’ ‘does this mean I will have to deal with some kidney or other body issues in the future as I try to fix the present with these drugs?’ ‘and if my doctor puts me off the meds, and reduces to a few painkillers, what if I become so addicted I no longer know if it’s for actual pain am taking or just the feel good effect. What if I become tolerant to those meds I need something stronger and end up looking for ‘alternatives’?
You are now walking into the unknown and most of the time, you not only feel alone but are alone in this journey…that through thick and thin friend starts to fade away not only coz they cannot understand but they just can’t deal with a less than ‘normal’ you. You look at your partner and you keep wondering how long before he also gives up on you and also leaves. I have had very many friends vanish even a boyfriend who walked into non-existence. Being diagnosed of a chronic illness requires you to wear a tougher skin than normal and not just you but those close to you. This is hard on you already so you keep thinking how is someone supposed to be with you and love you in this state you are in? How is someone to commit to someone already broken? You feel you don’t want to burden others but at times you need them close to you. You feel like you are asking for too much of them and that’s when loneliness really hits you. That’s when your pillow and tears are best of friends. No one feels your pain and most don’t really care to know how feel. You feel like a stranger among people you have always known and feel the need to escape. To start anew but you keep thinking escaping only gets rid of the people, the pain runs away with you.
Yes, it is scary. Scary when you don’t know how tomorrow will be. Today you were happy and active but tomorrow morning, you can barely lift your head let alone your body out of bed. At those critical moments, you wish you could just not wake up and no, I’m not talking about getting out of bed but completely not wake up. Yes, I have had those moments. Moments when you hate yourself and your body for accepting this pain. You keep asking yourself what exactly you did wrong to deserve this, what you could have or have not done. You are angry at God because if there is a lesson to be learnt here or if this is part of the journey, screw it, you are not interested in His unknown missions or messages. Can’t He just send a text with whatever He wants to say instead of putting you through this hell?
It scares me when someone knows that I have a chronic illness, and that is what they all want to focus on all the time. It’s like I am no longer the person I used to be but a walking chronic patient and all I want to hear is all about that and all the hopes there is for us and the methods there are to improve my illness. You bring your little Wikipedia knowledge and you’ve become an expert now and that’s what there is to talk about. As if, my brain got diluted and can no longer talk politics or the weather or discuss the latest books, films and scientific discovery(yes, I love science). I have a chronic illness but it is not me. It is not what I am composed of.
I have had my dark days and with time, I think I have improved or maybe my tolerance to pain has improved… now that is scary. Is my tolerance high or am I genuinely improving? Maybe I should put a finger on a hot stove to find out. I became angrier at my doctors because I wasn’t ‘cured’ after all this time even though I knew very well there is no certain cure. I know I need to get a laparoscopy but every time I keep thinking of it I wonder, ‘what if it doesn’t work?’ ‘what if I am those who need several of such and it still doesn’t get rid of the pelvic pain?’ ‘what then, am I ready, mentally and emotionally to deal with that?’
I pray a lot and not just because He truly can hear me and He is the person I can share and He won’t judge or run away but I pray for emotional strength to bear with this. For emotional stability not just for me but for those who need me. For someone with a chronic illness, invisible or visible, the biggest challenge is the mental and emotional side of it.
On that note, I will leave it there, lest I actually scare you away with more scares. In short yes, it is a scary lonely journey, and as much you know me to be a very strong person and I believe I am, I’m only human, I bleed when I fall down, I crash and break down.