One of the most difficult parts of having an invisible illness like bipolar/depression/schizophrenia/Fibromyalgia/chronic fatigue etc. is that people never really understand the depth of your pain and how much you may be going through. Someone having to live with an invisible illness has to try and do so much more to be able to survive in a world full of judgmental people.
How People Talk and Treat Those with an Invisible Illness
If you can enjoy a day-long outing with friends why can’t they do this?
You all look fine, so just get up and do your stuff!
Just now, you were happily chatting with your friend, but just now when I asked you to do this, you started getting all the pain in the world?
You have just got to be strong and stop making excuses for everything!
Enough of your tantrums, we are already struggling hard because of your stupid name-sake disease, now stop seeking sympathy for everything!
Because of you, your entire family is facing difficulties!
I could go on giving you examples of how rudely and brutally, those having an invisible illness are treated. Being a Fibromyalgia patient myself, I have suffered extremely harsh circumstances by my own people and not just emotionally but physically too. And trust me I say that with tears in my eyes, and bruises in my hands. Why would anyone do that to a patient, you ask?
Very well, here’s why!
What is Fibromyalgia?
Fibromyalgia is a condition very rarely understood, partly because of its nature and lack of awareness. Perception of extreme pain for those suffering, as if a truck has just run over you, and fatigue as if a huge elephant is sitting right above your head when you walk; yes that’s exactly how it feels.
To cap it all off, at times when there is too much work and stress, you feel as if bullets are shooting through you, your hands and legs are being stabbed by a excruciating sharp knife all through different places in your body simultaneously and it just doesn’t end there. An extreme migraine acts as the cherry on top with all the other kinds of pain that I have just mentioned!
Now close your eyes and try to imagine this life and pain 24/7 without even a second of a break. Yes, that’s how much a Fibromyalgia patient goes through. While yes, sometimes things are better and the pain lessens, here is the crux!
By looking at the patient you can never infer what all they are going through, because it’s invisible! You can’t see how much pain or exactly what pain is going on in their life on any given day.
How SHOULD We Talk and Treat People with Invisible Illnesses?
So coming back discussing the way people talk to a patient, “Stop making excuses or using that classic line of “If you can do this, why not that!”
Fibromyalgia and most other invisible diseases have a psychological connection with them, if you are happy, stress free and around people who make you feel light and delighted; your pain feels a lot lesser.
But then when you come back to your bed in the night, your back will burn as if kept on a stove and all the pain triggered by exhaustion will start making you cry, and you won’t be able to sleep.
But still a patient understands that they can’t give up, they have to bear it all to be able to enjoy a few times in a month. They do all that they can to be as less of a burden and as good of a professional as they can.
These cruel and mean comments which sometimes manifest into physical abuse make these patients’ life so miserable that you cannot ever imagine. It’s easy to look at people and pass on your ugly opinions, and ridiculously most of the times it’s very close people, family and loved ones who do this to the patients. I just explained you through one of the examples, why chatting or an outing is easier than doing something which needs more focus and physical work.
Imagine, there must be numerous such connections and invisible links that even I don’t know about someone with an invisible illness, and then we as a family of loved one think and portray as if we know everything and easily abuse the patient or accuse them of mistakes that they never did.
My only request to all of you out there is to meet the patient’s doctor, understand the nature of their disease and learn how to behave in front of them, they are the unlucky ones here undergoing tremendous amount of pressure and pain, all I ask is to be gentle, kind and affectionate with those around you.
Never judge someone by just looking at them, it’s the worst mistake you can do ever in your life.
You would have understood how, there is a lot more about these diseases, than what is visible to your bare eyes, but what if you want to stop abusing and help understand them and their needs better?
Family therapy is what’s needed in such cases, every family member and most importantly parents should undergo family therapy where a professional who understands about the illness gives them detailed information and guideline on what and what not to do with the patient.
How to be more kind and gentle and help them live a little bit happier and healthier than their incurable illnesses allow them to be.
Please be a helping hand, and if you can’t be that, do not be a reason for their pain and sadness. Each thing that you say, each finger that you raise and each assumption that you make over these patients is going to hurt them emotionally and that in turn is going to trigger their physical pain.
Support, awareness and understanding is what we need from you guys out there who is blessed to live a pain free Life. They throw their expectations and assumptions on you and think that you are too lazy/careless/manipulative/stupid to do anything ever.
Little do they know how much their harsh words and abuses worsen your pain and sufferings? People who have such patients as their family members or friends should understand that there is more to their illness than what is visible. Try to be kind, loving and gentle. Trust me, these chronic invisible diseases already make hell out of their lives, please do not worsen it for them.
If you can’t be kind, please don’t be around them.
Always keep in mind that having a disease isn’t their fault and they didn’t ask for it, who knows it could be you. Probably then you would understand the real pain of having a disease which is seldom understood.
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