Everyone wants to present the best version of themselves. We all have an image of how we’d like to look and often the image in our mind, falls short of the reality we see in the mirror.
Of course some mirrors give a very distorted view. I have in my home what I call “naughty and nice” mirrors. The nice mirrors reflect a slimmer version than the naughty mirrors. The naughty ones seem to squash and expand my ever growing, crippled body. It’s not really a distorted view but the reality of my new normal. I definitely need time, lots of time, to adjust to looking at it.
A Tricky Discussion
I always feel discussing weight, or body image in general, is like skating on thin ice. It’s so often the elephant in the room. A skinny person at a social occasion will be heard saying how fat they feel, while standing next to someone who’s just signed up for a weight loss program and is currently 120kgs!!
Someone struggling with severe hair loss, and are wearing a scarf, hair topper or wig for the first time, may find themselves in a conversation with others who have natural lush, flowing hair and they are complaining about having a bad hair day.
We can be so insensitive sometimes without even trying.
I don’t want to talk about weight loss or gain, or specific appearance concerns in this body image post. I want to talk about battling disabling chronic disease and the changes it brings to our overall appearance. The kind of disease where you have no choice but to take a meal full of medications everyday. All of which cause weight gain or weight loss, hair loss, skin changes, chipmunk cheeks, or sunken eyes, even if you go on a healthy, vitamin, protein, iron enriched diet.
I’m talking about the debilitating kind of chronic illness which cripples your body and takes away the ability for physical exercise, no matter how hard you try to stick to any kind of movement regime.
I’m talking about the debilitating kind of chronic illness which makes you so sick, you are underweight and unable to get into a healthy weight range.
How do we manage living with these kinds of chronic diseases and adjust to the physical changes accompanying them?
You’re Doing All You Can
I’m on a range of medications renowned for side effects. Lyrica, Prednisone, Tazac to name a few.
I’ll be on these for life. I simply don’t have the option of stopping them and I’m ok with that. I have to be. My disease has no cure or treatment, so palliative care by way of managing symptoms, is the extent of what’s on offer. Each of my medications give me a certain quality of life, albeit limited, which is so important to my overall well-being and survival.
These medications have not been without side effects, the most obvious is my weight gain. I’ve gained 20kgs in 5 years. Part of the weight gain is fluid retention, increased bone density due to my rare bone disease and a redistribution of fat to my abdomen, face and neck, due to requiring long term steroids.
My diet couldn’t be healthier. I don’t binge eat. I don’t eat processed food or drink soft drinks. I have a colostomy so I need to be very careful what I eat.
I eat a balanced diet of fruit, vegetables, cereals, eggs, yoghurt, lean meat etc. I count my calories. I drink plenty of water and I have small meal portions.
Most importantly, I have been assessed by a Dietician. She reviewed all I was eating, my medications, my diseases, my mobility etc.
Her final assessment…
“Sam, you are doing all you can”
There was nothing I could change. She admired how I pushed through my mobility issues to try and walk around the house and potter with minor household tasks.
She admired my eating habits and didn’t change a thing. She even said a weekly sweet treat was not only acceptable but necessary when living with such complex health issues. It’s all about balance and quality of life.
She told me not to focus on how much I weighed at all. It served no purpose.
Sure, if I was eating the wrong things then changes could be made but I’m not. In some regards it would have been easier to know I was making unhealthy choices and could do something about my weight gain.
I’m not and I can’t.
It is what it is and for those of us with debilitating chronic disease, who are making healthy life choices already, I want to reach out and let you know, you are doing all you can. It’s not your fault.
Celebrating With Others
We will all have friends and family in our lives, who at times will be celebrating weight loss, or a new hairdo, new beautiful clothes, a fresh pretty manicure etc. All while we continue to grow in size, have broken nails, severe hairloss, a struggle to find flattering clothes and no energy to even think about getting to a hairdresser or beauty spa etc.
It’s not easy is it.
However, it’s so important to show love and kindness and celebrate with them. Their situation is different from yours and mine. Being an optimum weight and caring for our appearance when possible, is a healthy choice. It’s a good thing and should be encouraged in those able to achieve it.
A simple “well done, you look lovely” is all that’s needed.
Make sure you remind yourself you are doing really well with maintaining a healthy diet. You are doing really well moving as much as possible. Celebrate the fact you are living as well as possible with debilitating chronic illness.
Embracing The New You
If your new and unwelcome body image is outside of your control, the time has come to embrace the new you.
No point hoping for the “naughty mirror” to suddenly project a different image.
So how can we embrace our new image when we really would prefer to have a slighty better version?
I’ve been grappling with this for years as I continue to change through no fault of my own.
I’ve decided enough is enough and I’ve created an “Embracing The New Me” plan:
- Cut my hair short to lessen the new “bald look”
- Remove all my skinny clothes from my wardrobe. I’ve kept a few items just incase a new med causes sudden weight loss.
- Go online shopping and buy some clothes a size bigger than needed so I can be super comfortable on days when my fluid retention is out of control. I chose loose fitting tops, stylish with bright colours or patterns. It’s important they are pieces I felt excited about wearing. I got on the scales so I wasn’t being delusional about my weight. While I was 20kgs heavier than my ideal weight, I was actually 10kgs less than I thought. An unexpected surprise I wouldn’t have experienced had I not weighed myself. It was strangely liberating to own my new weight and give myself permission to accept “the new me”.
- I sat down to chat with my husband and asked him to tell me honestly how he felt about the “new me”. He said he could see how my skeleton had thickened as my disease has progressed. He could see how my inflammation and fluid retention changed my look throughout the day, as the overall swelling goes up and down. He told me he still loves me and thinks I’m beautiful. I can’t ask for more than that!
- Discuss my body image concerns, caused by my increased medication doses, with my Doctors. Together we can make changes to doses which may help me improve some of the side effect issues.
Song of Solomons 4 v 7 (NIV)
You are altogether beautiful, my darling; there is no flaw in you
You Are Beautiful Too
Crippling Chronic Disease is hard enough, without you trying to conform to the goals of others not walking in your shoes.
Don’t be scared to speak to a Dietician, or your Medical Team, about the right expectations for you. Once you have your own “Embracing The New Me” plan, and you know you’re doing the right thing for your situation, you can take unnecessary pressure off yourself.
You can then relax, have a greater sense of well-being, and focus on enjoying what quality of life activities are within your capabilities.
Above all else, remember this….You are beautiful!
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum Medical Musings with Friends. It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page
I also write @ Blogs by Christian Women
If you would like to read a little more about my journey, here’s the link to My Story