The Critical Importance Of Validation With Invisible Diseases
Why would anyone add unnecessary burden to someone so heavily burdened already? I consider this to be the actions of a monster. It would take a callousness beyond refute to steal away the one thing you have left when you have an invisible disease...understanding. Validation is, quite often, the only thing that I have in my life that is positive. When I am unable to function due to my invisible disease, a knowing glance from my wife is all I need to feel at ease, and loved, and I find more strength. Just to know that someone else understands my struggle and acknowledges the difficulties I face, as I face them, is something so positive I can hardly articulate.
It is not just "nice" to feel like someone cares. I mean, sure, it is nice to feel like someone cares, but having someone know and care about my struggles almost makes me not care that I have this disease. Let that soak in for a moment. There is some powerful magic in not being alone. When she understands my pain, it makes my pain lessened or at least to say it makes it more tolerable somehow. When you die, you will also want someone to hold your hand. It will bring you comfort in a time and place where comfort is very far away. When you refuse to accept or acknowledge someone with an invisible disease, you are refusing to hold the hand of a dying person. You have no ability to help this person in front of you except to offer the solace from one human to another. In the moment where you should take the hand of this person, and tell them that you care about them, and their struggle, and their pain...instead you cast them into darkness with your callous doubt.
What is the real question here? - Do you doubt that diseases exist, or do you doubt that diseases you can't physically see exist? Or perhaps you doubt whether this person has a disease? Maybe they do have a disease but you believe that they are embellishing their pain and struggle...most often I suspect that the real answer is less insidious. Hopefully you do not have people around you that care so little such as these examples, but more likely you are surrounded by regular, faulted humans, who also feel hopeless, and helpless, and frustrated, and scared. Everybody finds their own way to express their feelings and not everyone is able to do this in a way that is healthy for themselves or the people around them. I am being kind here as it would be easy to demonize people who diminish the struggle of those living with an invisible disease...at least from my perspective since I live with an invisible disease and so it is as real as anything can be to me. Perhaps you are not the same.
We should protect those that need it the most - Suppose with me, if you will, that things are different than they seem. Indulge the idea that invisible diseases do exist, and the people who get them can suffer immeasurably from them. If this were true, and a person that you know experienced incredible pain and undue hardship, how would you feel if you saw a stranger run up to them on the street and punch them, or push them to the ground? Most people, decent people at least, are infuriated at the thought of someone unable to defend themselves being attacked. Regular upstanding citizens can and do fly into a blind rage should someone hurt a child or an animal. This is how I feel when I hear about others with autoimmune diseases or other "invisible diseases" like fibromyalgia not receiving support from the family, friends and coworkers around them. How could you attack someone who is already so vulnerable? How are you so confident that nothing is wrong that you would risk even the possibility of adding to the pain of someone already suffering so much? It is incomprehensible to me.
Autoimmune disease is bad with support but terrible without it - I have support around me. I have family and friends that know and understand my struggle. I am not the only person in my family with autoimmune disease so the path was already paved, so to speak, for me. I operate my own company so I fortunately am able to avoid one of the most difficult environments for invalidation of an invisible disease - the workplace. Even with the support network I have in place there are days where I can not function. Some days it is too much physically. Some days it is too much mentally. Some days it is both. I can go from being able to lift 200 pounds repeatedly to not being able to hold a pencil or a cup of water. Some days I can write in depth technical documentation for my consulting business but other days I keep getting confused while trying to prepare a smoothie for breakfast. I have studied everything I can find to read. I have changed my life, my lifestyle, and my diet with military level discipline...but I can not escape the difficulties of my invisible disease.
What does the pain from autoimmune disease feel like? - I can only tell you what I experience, and that I consider my manifestation of autoimmune disease to be fairly mild compared to many others. My bad days I describe the physical feeling to that of having the flu, and then getting in a car accident, repeatedly. This is the "behind the scenes" pain, but the acute pains, muscle spasms, migraines and joint pains are more intrusive and difficult to simply ignore. When flaring I am fevered, less lucid, unable to focus, anxious, shaky, and every part of my body hurts from my skin to my hair follicles, internal organs, muscles, bones...imagine having a disease where you are dead exhausted because your immune system is attacking your bones so much that the bones are getting smaller and loose in their sockets - but the people around you do not believe you. Or a disease that is slowly corroding your vital organs...but the people around you always comment about how "you don't look sick". It is almost as bad as having a disease in the first place.
How important is validation of what you are experiencing? - When I received my diagnosis of fibromyalgia, and then later MCTD, it was the most profound feeling of validation. I think I was supposed to be sad, what with receiving a diagnosis of an incurable autoimmune disease and all, but all I felt is validation. At the end of the day nothing changes for me when some person in a lab coat tells me I have some scary sounding thing wrong. I go home and feel the same way that I did the day before. I have been living in this skin my whole life and I already know what it feels like and what the symptoms might be. But going home and knowing that what I feel is not normal was incredible. For decades I lived with the assumption that everyone felt random and near constant pain. As it turns out there is a valid reason, and explanation, for why I feel the way I do...and I would not let anyone take this from me.
If there is a person in your life with an invisible disease you have an obligation as a respectable human being to not add to their difficulties. If you genuinely did not know any better, and did not realize how incredibly hurtful it is to someone to invalidate their struggle with an invisible disease, then this is completely forgivable. However, now that you have been made aware the severity and critical importance of not stealing their validation, you are obligated to hold their hand. You can not fix anyone or cure anything but your care and understanding alone can feel just as good to a person who is dismissed, isolated, and living in pain. There is no reward for your faith in the invisible disease, and by the time there is physical proof enough that you are satisfied beyond dispute, you will wish very much that there was not. Find it in your heart to not doubt someone through your frustration, or your helplessness, or your confusion. We are better when we help each other and you can either choose to hurt, or you can choose to help.
About the author - Steve Goodale is a blogger and technical specialist from Ontario Canada, winner of the 2018 Industry Leadership Award, who reaches over three million readers per year with his popular pool and spa blog. Steve started the www.CookForMeBaby.com blog about healthy eating after being diagnosed with a rare and incurable autoimmune disease. You can read more on his story about life with MCTD here. For more healthy cooking inspiration check out his other delicious recipes.