Kassi Martin's Blog
Unleashing The Voice of Woman - Jane's Story
Here is Jane's story:
A Day in the life of…….Someone who lives with a hidden illness and What It's Really Like
Oh you're looking well, have you put on some weight? Just what you really want to hear from your slim, vibrant friend. Hmm you think, I wish I could lose some weight! But that's not easy when you are in constant pain, made worse with even moderate exercise. Then if you are asked how are you? You answer "fine thank you" hiding the fact that you are not really. Or if you say not too good today they say "Get well soon" I wish it was that easy. People don't realise that living with a Chronic Illness is a life sentence unless there is a miracle cure. If you have a Chronic illness, it will be with you forever, there is no getting better soon, no happy ending, and no end in sight.
That is why, often it's not the physical pain that's the hardest to deal with, it's the emotional turmoil that goes along with it. I often feel guilty and a burden to my family. I makes me feel crushed, that my illness is taking over the old me. The person I once was, strong, independent and full of fun. Instead it's only a shadow of, my former self you see. Some days I feel so poorly I can't face the day ahead and am too sore to get out of bed. They are very low days and hard to deal with.
How on earth can you fight this emotional suffocation, when you know it is never going to leave you? If you have a "normal" illness you go to your GP get a diagnosis, treatment and "get better" Chronic illness doesn't follow that path. Diagnosis is difficult as there are so many symptoms; it is hard to explain a tiredness that never goes away, or a feeling that your limbs are heavy like lead. That your mind constantly whirs, whilst simultaneously feel like cotton wool has been filled in the gaps.
Being ill in this way is like living with the unknown. Every day is different; it's hard to make plans as you don't know how you will feel when you wake up, will you feel ok or 100 years old. So it is hard not to feel anxious, depressed or completely lost when you are living one huge question mark. There are constant questions and not so many answers.
When people say "Get well soon", or ask how you are feeling it's an uncomfortable exchange, you can either say "I'm fine thanks" or horrify them with an honest answer. My usual answer is a smile and I'm fine. It has taken 30 years and finally a trip to a Rheumatologist to confirm I have Arthritis of the Spine, Hips, Neck & Shoulders, several Compressed Discs and Fibromyalgia. I also have IBS. Each day is different I really enjoy the good days and usually suffer for the rest of the week as on a good day I try to do as much as I can. People don't know how to deal with Chronic illness, both the person who has it or the people around them. No guidebook to show them, no answer to all the questions because it is so personal.
The title of this blog is "what it's really like" and I would like to try to explain how it makes me feel emotionally….. I feel that my body is a failure, it lets me down constantly. I feel guilty. I feel like I let people down around me. I feel exhausted from trying to appear stronger than I really am. I have a heavy heart knowing that my illness affects my husband, children and grandchildren's lives as I cannot always do even simple things. I feel a sadness that sits deep in my bones, there is a lump in my throat that often stops me from speaking how I really feel and an embarrassment that my body feels broken. That is on a bad day, which is more often than those around me realise. On good days I feel happy because there is not so much physical pain it can be dealt with. I feel proud of myself; I enjoy my day as I know it will be short lived. I am more open, have fun, act silly, have a good time.
When I was diagnosed with Endometrial Cancer in 2018 I once again closed the door. I kept it to myself for as long as I could. I hid my feelings once again, I was scared & didn't want to show my family how scared I was. I have learnt to cope in my own way, and I really should have opened up to someone, but I didn't. Just like the Cancer, my thoughts grew inside my head it made me go to a dark place, I've been there many times. But this time it was darker than before. My every waking & even sleeping moments were overtaken with fear. Just that one simple word just filled me with dread. I saw the fear on my families faces & hoped it didn't show on mine.
But there was a light shining & I fought my way thru & stepped back into the light. It took a while but I found my way. I'm very grateful to the wonderful Doctors who were there for me & continue to keep an eye on me. I try to live life to the full every day, I tell those I love, just how much they mean to me. I still worry, is it back… are they sure its gone? I think these thoughts every day, but I know how lucky I am. I get up, put on a smile and get on with being me.
This is the way my life is, I've learnt to live with it. It may not be the one I would have planned for or imagined. But it is the one I have so I will make the most of it. You can't take anything for granted and cannot sit on my laurels, I have an illness, but I still have a life. There are so many people with Cancer and other terminal illnesses, so I don't feel sorry for myself (well not all the time, but I sometimes need a wee moan)
You learn to embrace all that life has to offer you. Enjoy every good day as you don't know how or when the next one will be. Learn to appreciate the small things, the good things that make you happy. Take control of your own destiny and try everything you can to make your own health better, thru diet, care, medication, alternate therapies, talking, sharing, and living. Being sick makes you a lot of things, many negative but some positive. Strength of character, empathy, weakness, guilt, wisdom. You have to take the lows, but learn to see, embrace and appreciate the highs too.
A day in the life of…… someone who lives with a hidden illness and what it's really like is my story. If you have a friend or relative who suffers from Fibromyalgia, Osteo or Rheumatoid Arthritis, IBS, Depression, Crohn's Disease any hidden illness. Talk about it, raise awareness, ask questions tell them you want to hear how they really are, don't just take "I'm fine" as the answer.
Be kind in this cruel World & you will be rewarded many times over. A smile is all it takes to make someone's day a little better.
Thank you so much for sharing this, Jane. It takes a lot of courage and I really appreciate you being so open about how it affects you. As someone with Fibromyalgia, arthritis, and IBS, I relate totally to what you have written. And well done on having the courage to be the first to share your story too.
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