I've come across this photo many times in the past few years. Those of us with chronic illness often find that the internet is a good place to seek support and find people to connect with who understand what we are going through. A place that I've found that can bring me support, understanding and even humorous things based on the life of an sick-person is Pinterest. If you're reading this I want to ask you to sign in to Pinterest and just type in "Chronic Illness". You will find everything from this above photo, to thousands of ecards based on the funny little things in our lives, to inspiration and encouraging quotes and also upsetting and very real emotional quotes that others have shared. But this above photo is what I want to talk about today.
Since the first time I saw this it has stuck in my head. It's like when someone talks about something horrible and says "And that's just the tip of the iceburg." Meaning, yes what you're talking about is horrible, but it is so much worse than we even know. I have been open and honest on this blog, but this blog, is just the tip of the iceburg. The way I speak to friends and family even is often just the tip of the iceburg. To truly get into detail about the suffering and emotional anguish would be draining and vulnerable and so difficult. I am taking steps to get there, but it is not an easy task.
Why I really feel like talking about this is because out of all the supportive people in my life, there are also those that are not supportive. There are those that have no idea how to support me and love me for who I am and what my life has become. Often time's these people who come off as not being supportive; really do want the best for us; but they don't know how to efficiently show us that. They think that there is a solution and that if you would just listen to them, they could help you fix the problem. This is what I've come to realize anyway. Fixers hate chronic illness because it cannot be fixed or controlled. Chronic illness disrupts your life and messes up your plans and those of us living with it have learnt to accept that reality.
In the past couple of weeks I have received multiple remarks such as "If you sit on that couch any longer, you're going to rot there." Also, "Get outside and stop being so lazy." Oh and another one, "Go do something with your life." And yes, I am starting to cry as I write this because one of the people that means most to be in the world is the person that is saying these things and it breaks my heart. The thing is, what this person doesn't know and refuses to try to understand is that it's not just about a diagnosis and it's not just about the pain. There are a million little things happening to my body that I never speak of because they are so normal to me at this point that that's how I view them: normal. Although, when I really think about it I know that none of those things are normal.
It is not normal that I experienced menstrual bleeding for 90+ days straight, it is not normal that my muscles spasm and twitch so violently and regularly that I can see the muscles jumping and feel them aching for hours afterwards, it is not normal that I experience sharp, electric-like pains in my neck, legs and arms, it is not normal that at least once a weak I have debilitating leg cramping, it is not normal that the backs of my knees and my elbows have an almost constant ripping and pulling sensation, it is not normal that I experiencing pulling, aching, throbbing and ripping pains throughout my lower abdomen on the regular, it is not normal that I often pee 30+ times a day, it is not normal that my actual eyeball hurts when I look up or to either side, it is not normal that I can wake up from a 13 hour sleep after fighting insomnia for 5 hours and feel completely and utterly exhausted and fatigued, it is not normal that I had a surgery that should have made me feel better and I came out feeling 100% worse, it is not normal that as I am writing this my fingers are twitching, my left wrist is throbbing, and my shoulders are aching in a way I cannot even describe. These things are not normal, yet they are my normal.
So please, before you go ahead and call me lazy and unmotivated or get mad at me for spending the day on the couch while you went to work; take a minute and maybe ask me why I am on the couch all day today. Because, I've had a very exhausting couple of weeks in my books. I tried hard to help out around the house. I've cleaned and cooked meals for the entire family. I've went for walks and took family photos. I've planned a party and attended it. I've acquired a sinus-cold that's made me feel even more like death. I've attended doctor's appointments and family get-together's. I have tried to wean myself off of sleeping pills and am now having extreme bouts of insomnia that cause me to lay in bed for 3+ hours before falling asleep. I wake up earlier than I'd like to every day because I feel guilty for sleeping in past 11, even though I didn't fall asleep until 4 AM.
The little things that you do mindlessly every day are things that take the majority of my energy and effort. Please remember that no matter how much you may think you know about someone or an illness, you do not know what it is like to live with that illness or the emotions that come with it. Please, please, please be thoughtful and consider your words before they come out of your mouth. Maybe instead of judging someone for not doing what you think they should be doing, ask them why they are doing what they're doing; because likely, there is good reason and they could use some support.
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