9 Years ago I fell ill and I have to say one of the most frustrating things about suffering from invisible illnesses is the fact you look and act ok so people assume you are ok inside. Of course, if I was in their shoes, I would think exactly the same thing! If a person looks ok then its hard to believe that they are not ok.
However the stark reality is, although I look ok, I am not ok. The other issue I have had is that I suffer with Vestibular conditions and they are not widely known or understood so it used to be a constant battle to try and educate people about them. Over the years I have learnt not to get frustrated about the fact that people do not and cannot possibly understand what I/we go through on a daily basis. If I did dwell on it too much, it would crowd my mind and engulf me to the point that I get my bouts of depression back. So I have spent so much time over the last few years meditating, EFT tapping and changing my mindset, which has helped me so much.
Every person has something to contend with, understanding everyone’s symptoms, how it makes them feel and the mental impact it has on them is pretty much impossible. We cannot expect people to understand what we go through, as they are not living in our bodies. However one thing that is certain, you can support people despite not understanding what they are going through, FACT.
Over the years I have wasted a lot of my breath, I have wasted it on trying to explain my conditions/symptoms etc to other people who do not get it. I end up exhausted trying to explain how debilitating these conditions are for people, to no avail. I have had people say some very hurtful and upsetting things to me over the years and also behind my back (some don’t even know that I know but I do! lol!). People saying things like; “its all in her head” “she must be stressed” “its just anxiety” “its stress” ‘its your hormone” “just take a headache pill and go lie in a dark room” “why can she not move on and just get on with it” “surely she is better now she is exercising and eating better thats all that was wrong with her in the first place” “If she looses some weight that will help” “Maybe you should have a holiday” “try not to think about it and block it out” “You have obviously not seen the best consultant” “is there not a pill you can take to get rid of it all”. Oh the list goes on, I think I could write a book titled “50 shades of hurtful comments to invisible illness sufferers”.
Some people have tried to be helpful with their comments over the years, but some are just damn right rude and blatantly being nasty. It is like some people just cannot believe you have these symptoms and conditions, they sound out of this world, like you have made them up!!!! Well let me publicly say this now “You could not make this S**t up if you tried, trust me!” not even the best movie director could make this up for a script! Some people have tried to invent simulators/virtual reality machines to mimic migraines/vestibular conditions and how they make you feel, nothing has got close to it yet! I doubt they ever will. People also do not understand the impact these conditions have on your mental state. They wear you down, sap you of every cylinder of energy, take you to the deep depths of your darker soul and rid you of all confidence and make you feel like you have no place in this world, as your world is totally skewed and unreal. I have come from being the most confident person pre conditions to being an anxious, dizzy and vulnerable mess. Mark my words these are conditions not to take lightly, they are a living hell.
Over the years I have tried everything, I mean EVERYTHING to get better and why wouldn’t you try everything in desperation. One of the comments I heard multiple times (some behind my back!) was “Well she/you obviously have not tried everything to get better or maybe you are missing something or why don’t you try this and that”. Trust me I have left no stone unturned! Plus now I am getting so much better, I now realise that you can do too much ‘externalising’ and almost too much research, what you actually seek is sometimes already within you! We actually have a lot of the tools to heal in ourselves! So I now have my maintenance/management formula, my treatment plan has been meticulously tweaked over time. I now know what works for me! But I am one of the lucky ones. I speak to countless people every day, sufferers from around the globe. Some are still seeking solace and this magic formula and I pray every day for these people, that one day soon they will hit the mark with what works for them. Unfortunately I fear that some will never get better, as I believe you can get in the way of “yourself’.
So how do I now deal with negative, judgemental comments?
I send them love and let them be on their way thats how! I am not rude, I do not stoop to their level I do not entertain them or waste my breath of these types of people. These people clearly have issues of their own, more often then not I have learnt that the people who are judgemental, bitchy, nasty, bitter, jealous against me or anyone else, are the ones who have deeper set issues then even I do. They unfortunately have not found themselves, they do not love themselves, they may never do so as they are so wrapped up in making other people’s lives miserable and in turn make their own lives miserable. Remember the things that people say to you or behind your back is their opinion/thoughts, its their issue not yours. A wise lady once told me, never try changing someone, you will drive yourself mad doing it!
I do not have to explain or justify myself, if people really wanted to understand what you have, they can read up about it, the internet is at our disposal! It does not give them a 360 degree understanding but it does help knowing the facts. I spent some time sending around links to my friends and family, when I got diagnosed with my first condition Vestibular Migraines. Hoping that they might be interested to learn about my condition, how it limits me, what the symptoms can be etc did they read it? not a chance! The few that did bother to read it and have since read books on it, newspaper cuttings and other forms of information, are the ones I know support me and care. My CBT therapist once said to me “The reason why people do not make the time to understand is because they are the selfish ones, that will have to give up some of their time to support you.” How true that is. I have learnt about people so much over the last 9 years, on one hand I have been amazed by how selfish, how rude and how disrespectful and non-empathetic some humans can be. On the other hand I have met THE most amazing people, they are the ones I hold in my heart, they are the ones I communicate frequently with and they are the ones I will give my time up for.
So next time you find yourself trying to explain and justify yourself to someone STOP. Spend more time speaking to the people who are there for you and who are not judgemental or negative, spend time with your supporters not the selfish non-supporters, life will be a lot easier for you!!
This was not a RANT blog at all, this is to highlight the fact that we do not have to spend our precious time explaining ourselves and our conditions to people. We are in control of who we engage with.
This blog post is to help other people out there who are currently getting very frustrated with the people who just do not get it. They will NEVER get it, you cannot get it if you do not have it SIMPLES. Instead spend your own precious time giving yourself time, self love, healing hugs etc.
If you are dealing with chronic illness of any sort, you are WARRIORS. You are strong, brave, courageous amazing people who deserve to live life to the full. I send you healing vibes and love.
Thanks for reading, would love to speak to anyone about this topic, so feel free to PM me on Facebook/Instagram or at firstname.lastname@example.org
Always here and always care.