“Get well soon!” That’s just one of those every day sayings right? But what if you have an illness that you will never get better from? The worst part about having a chronic illness is that it is a life sentence, unless there is some miracle cure, if you have a chronic illness, it will be with you for forever, there is no getting better soon, no happy ending, there is no end in sight, there is no cure or end game.
And that is why, often it isn’t the physical pain that is the hardest thing to deal with, it’s the emotional pain that goes along with it. The guilt, the idea that you are a burden to those around you. It can feel like you are being crushed, that the illness is drowning you and swallowing up the person you are, leaving only this shadow of a person, a patient, weak, ill. It is so hard to deal with this.
How on earth can you fight this emotional suffocation when the root of it is never going to leave you? If you have a ‘normal’ illness, you see the doctor, get a diagnosis, receive treatment and get better. Chronic Illness just doesn’t follow that path. Often diagnosis is difficult as the symptoms can be confusing and varied, it is so hard to quantify a tiredness that never goes away, or a feeling that your limbs are lined with lead. How do you explain that your mind whirs constantly whilst simultaneously feeling like it is filled with porridge?
Being ill in this way is living with the unknown. Every day is different, it’s hard to plan when you have no idea how you will feel when you wake up, not knowing whether you will feel ok or like you are 100 years old. And so it is hard not to feel anxious, depressed or completely lost when you are in living one huge question mark. There are constant questions and often no answers.
When people say “Get Well Soon” or ask how you are feeling, it is an uncomfortable exchange, you can either lie and say ‘fine thanks’, or horrify them with honesty ‘Well I have a slight blockage, a hernia, I have been to the loo 16 times today, the acid in my poo has burnt the skin on my bum and I am so tired I feel like I am dying’ or the one I usually go for is ‘getting there!’ with a cheery thumbs up…
People don’t know how to deal with chronic illness, both the person who has it and the people around them. There is no guidebook for lifelong illness, no way to answer all the questions because it is so personal and there are so many illnesses that are a lifelong battle.
When you have an autoimmune disease, your body is literally fighting against itself. The physical side of it is all through the body, living with daily pain, fatigue, aches, toilet trips, medication, food intolerances along with hospital trips, surgeries, treatment. It is, at times, too much to bear.
But mentally and emotionally it is devastating.
The title of this post is ‘what it’s really like’ and I want to try and explain how I feel mentally…
I feel like my body is a failure, that it lets me down constantly. I feel guilty. I feel like a burden to others. I feel like I let down people around me. I feel like someone has a grip on me, a crushing hold on my chest that is squeezing the life out of me, holding a pillow over my face. I am exhausted from trying to be stronger than I feel. I feel a sickly jealousy when I see healthy people. A heavy hearted knowledge that my illness affects my husband and children, that I am not the wife he deserves or the mum they need.
I feel a sadness that sits deep in my bones, a guilt that is a lump in my throat stopping me from speaking and an embarrassment that my body is so broken.
That is a bad day. On a good day where I have little pain, few toilet trips and energy in myself, I feel upbeat, I feel proud of myself, I enjoy life because I know this healthy feeling may only be brief, I love harder, I am more open, I laugh longer, I am silly, I am fun. I have hope.
And hope is key. Without hope, we have nothing.
This is life and so you have to learn to live it. And LIVE well. Your life may not be the one you have hoped for, the life you ever imagined. But is the one you have and there is nothing you can do to change that.
You can’t take anything for granted, and sit on your laurels, you are ill but at least you have a life, there are many facing cancer and other illnesses that are terminal and so you can’t feel sorry for yourself. (Not all the time, but sometimes everyone needs a full on mope!)
You learn to embrace and enjoy every good day you have, as you don’t know when the next one will be. You learn to appreciate the small things, the good things in your life. You take control of your own destiny and try everything you can to make your health better, through diet, medication, alternative therapies, talking, sharing, living…
Being sick makes you a lot of things, many negative, but some can be positive. Strength. Weakness. Empathy. Guilt. Wisdom. Fear. You have to take the lows, but learn to see, embrace and appreciate the highs too.
What is living with a chronic illness like? This is my story, but ask others. You have a friend with ME/CFS? Lupus? Rheumatoid Arthritis? IBD? Don’t be afraid to ask questions, talk about it, tell them you want to hear how they actually are, not just ‘fine’.
The isolation attached to Auto Immune and Chronic Illnesses is immense and I feel that if we could all talk a little more about our lives, that we can help each other to bring discussions about illness into everyday life and make a difference to so many people.
This is my life with chronic illness.
Tell me about yours…