Lately, I have been looking back at the journey I’ve wandered and it’s sad to think that I’ve been chronically ill since 2012. Every single day, since then I’ve learnt so much about the ups and downs related to my hidden health conditions. I want you to know that these health conditions use what I would describe as a kind of lottery system, that give me highest of highs and the frightfully lowest of lows. Anyway, with that said, I sit here journaling for the benefit of all the sick and healthy people across the world. As I walk and talk my journey to more people with so many varied chronic illnesses, i see that the perception of what being sick looks like has an impact on more people than just me. It affects so many areas of life for every chronically ill person. I want to tell you, out in the big wide world how the phrase, “Oh but you don’t look sick” can seriously impact those people like myself, who suffer with invisible and chronic illnesses . It is time to look deeper into what chronic pain and chronic illness looks like in the real world, so that they can receive the necessary medical care.
As you are reading this, you may have just connected with me through social media, this blog or maybe you might be a good friend or family member. I just want to take an extra moment to talk to you about the phrase that I mentioned earlier “oh but you don’t look sick.” I want you to remember that as you are saying that to me, you have never seen me at home on the yukkiest and darkest days. So, at the moment that you are seeing me – you maybe right, I may not look sick or just because you can’t see my pain or illness, it doesn’t mean I am feeling at my weakest. Sometimes, dressing up helps mood, or even if it doesn’t help my pain, it helps to mask it. I’m so sorry if that messes up the idea of looking sick – but that is one indication of chronic and invisible illness. I don’t mean to sound ungrateful for what you may mean as a compliment, but it is kind of insulting to me or anyone that is chronically ill. That little phrase dismisses the pain and suffering that I and so many go through on a day to day basis. So, if we have just met, and I open up to you about my painful neurological condition and I don’t even begin to mention my other autoimmune conditions that I live with, please don’t think you’re complimenting me. If you follow it up with but “you’re so strong ,” you are implying that being sick should make me weak. Maybe you think I’m exaggerating my pain because you perceive me as strong. When you are ill for such a long time, strength fades, but pain doesn’t.
This journaling and blogging session is not about only me, it’s about all of the incredible souls that I have connected with through support groups to keep me from giving up. By telling me that i don’t look sick and that I’m strong, BRAVE or beautiful you are reinforcing the idea that I don’t want these medical conditions taken seriously. Maybe I should not take any pride in my appearance, when I am on my sickest days so your conceptions of these illnesses and my illness will fit together. The thoughts of what being chronically ill looks like is what stops people from seeking the medical attention that they need, receiving the benefits that they deserve, and being treated with respect. We are the people who even lose the much needed family support during their illnesses because their families do not understand or believe that being sick can look so many different ways. SICK LOOKS DIFFERENT FOR DIFFERENT PEOPLE ON DIFFERENT DAYS.
You don’t see me at home. You don’t see me the way my close network do. The way I live is so horribly embarrassing that even some of my doctors don’t see all of the pain. The mask I apply is there, because of the negative experiences with showing vulnerability. Even the necessary doctors’ appointments and my God, there are many are excruciating hard because it means that I have to take a shower with energy that I do not have. I let many of you see what I want you to see because to me it feels uncomfortable with showing you the truth. I don’t want to be ridiculed by the “oh but you don’t look sick” scenario each time I venture out. So, if you see me outside of my home when I’m dressed up, don’t presume. Living a chronically invisible ill life is isolating and lonely and there are many days that I don’t have the energy to make myself look presentable. There appears a huge amount of stigma around when we the chronically ill can’t shower ourselves because we feel that sickly, but there is just as much judgement because you can’t see the whole story within a moments notice. That’s why you only see me and most invisibly chronic ill people when we apparently don’t look sick.
So, I can’t explain my whole life’s chronically ill story across my blog or in a short conversation because without the endless health specialists notes and medical timelines, I cannot tell you about the hours and money that have gone into tests and examinations that I’ve had done and then there is all the extra stuff that I have taken or done to maintain a manageable pain level. In conversations apart from now I won’t tell you how many doctor visits that I average a week or how many pills that I’ve tried and have had horrible side effects or allergic toxic reactions. I won’t tell you about the pain of when the doctors don’t know what to do with me – yes, I have been turned away by many doctors because I’m too complicated !!! I want you to understand the frustrations that I and so many deal with on any given day. Being chronically ill is like you are slowly losing your sanity and that’s what makes us feel even worse. So if I brush my hair to try and look ok when I leave the house, but I carry so much pain behind the pretty faced selfie don’t think that’s my everyday experience. I go out of my way to document the moments that I enjoy life, so when everyone else is out there having amazing and exciting life experiences and I am alone in my lounge room with my heated blanket I can see evidence of the few times life shined.
So, to end positively, I do appreciate it when you tell me that my voice sounds strong or notice an improvement in my symptoms. But, if I don’t know you or you think that “but you don’t look sick” phrase you aren’t complimenting me – so it’s probably best to stay quiet, with my favourite saying “if you can’t say anything nice – don’t say anything at all”.
Life NOW- 2016 & beyond!
** I want to tell you that it’s at this point along the journey looking for healing and wellness through endless doctors sessions and research that I am now, standing strong because of a doctor that saw me at my weakest and was not going to let me take my own life. I am currently undertaking weekly physical and psychological therapies in order to be strong and well. I have also returned to my vegan dietary choice to strengthen and alkalise my internal health. Through this therapy, my love for writing again came and why this blogging map is here for you but probably what’s happened is my love for mindfulness with meditation and yoga. I am stepping a new and revived pathway to trigger brain, body, health and life to commit to a life to love. This is me, this is my passion and purpose – this is life being authentic and vulnerable so if you see, me out and about don’t utter the words “oh but you don’t look sick”. I have a incredible long journey to go, but I am on a path for myself and so many others. Let’s walk together for life in brilliant colours!**
I hope you may have resonated with some part of this – if so make sure you connect and let me know;
Wandering Towards Wellness, Globally”