A quick look at the support sites out there and you will see the most common topic and source of pain and torment is…Weight changes!

Without doubt it is the cause of the most discussion and debate. 

It breaks my heart to read the posts citing how women feel ugly, useless, unwanted, judged, rejected, depressed and alone because of changes to their weight since becoming ill. Some have even lost their marriages and partners! 

Sometimes it is the result of the medications which is designed to reduce our pain or symptoms i.e. Prednisone. Or it may be a result of the fact we are far less active and able to exercise. Whatever the cause, the results are heartbreaking. 

Women bare the burden and scrutiny of society for how we look and how attractive we can appear. It is the unspoken truth of this western society that women who can not remain attractive and slim for as long as they can are not fulfilling their duty to the physical requirements of this society. 

Since many women turn to drugs and medications to help manage their disease symptoms, progression and to try and remain in the lives of their families and friends, it is almost impossible to comprehend why this has caused such a negative backlash! 

Without treatment with some of these drugs, many women would be bed ridden and crippled with pain and terrible symptoms. Many of these women are also struggling to take care of their young children during these times and so it seems incomprehensible that they should have to endure these cruel judgements at a time when they are struggling physically, financially and emotionally. 

I know of many women who are refusing treatment of their painful, and sometimes progressive, diseases because they are trying to maintain their weight and appearance. Thus compromising their health and quality of life, and even risking their lives in some cases… All to meet the needs of social conformity and standards of beauty!! It is truly and completely horrifying. 

It is a form of social torture. 

And then if women take the drugs, and prioritize their quality of life, if they gain some weight they risk being scorned, shunned, embarrassed and even rejected by their spouses, partners, friends and family. Truly, truly disgusting! 

I know many women who are fighting severe depression as a result of their body image and weight gain rather than their actual disease diagnosis… 

Depending on the diseases we have, their severity and progression we are constantly in battle mode. Fighting for every bit of life and joy we can get and attempting to enjoy whatever we can with the hand life has dealt. To have to suffer this extra and painful indignity is completely and morally reprehensible!

My own experience of life with AIs has seen me gain weight and ‘Pred (moon) face’ and it has also seen me lose weight uncontrollably! I am currently battling some IBD activity which has seen my weight plummet to where I can no longer fit my clothes and have to wear a belt around EVERYTHING. The saddest part is that I can’t get the much needed nutrition my body needs. Skinnier does not mean happier or healthier! I haven’t eaten a decent meal in over 6 months due to pain and nausea. 

The online friendships I have made has seen me cherish these wonderful women  ( and men ) whom society may call overweight ( or underweight) as they were there when I was in tears. They were there when I felt I couldn’t go on. They were there with words of encouragement. They were there when I didn’t know if I could go on. They were there when I had lost friends, family and career. 

They are the bravest, kindest, most intelligent, inspiring, empathic, skilled, patient, loving, creative and courageous people I have ever met in my life… Overweight or not!!!!! 

I have to admit that due to my own disease activities I have been made more aware of how my body ‘functions’ and can ‘operate’ rather than how it looks. My own personal experience has been coming to terms with the limitations put on my physicality rather than focus on my overall outside appearance or weight gain. However I am acutely aware that the body image factor is still staring me in the face. I only have to watch social media and be reminded which women are considered sexy, beautiful and attractive. 

I am also aware that illness, diseases and disability isn’t considered sexy or ‘a catch’.

This is such a superficial society when it thinks the highest compliment it can give is “oh you look nice!”

My husband has a wonderful moral compass and never once made me feel ugly and unwanted during this awful transition and challenging journey. Whilst I appreciate it, I also feel that this is the minimum all healthy people should be expected to give a person with health challenges. It should be a perspective universally shared. 

I have even witnessed cases of where women have been told “you would be better if you were not so fat!” I am speechless and horrified. The additional psychological fallout from these comments, added to the terrible burdens already placed on the shoulders of these women would be enough to break the strongest resolve… Such needless suffering and pain!

I plead to all women (and whatever men this applies to) who have struggled with the changes of weight as a result of these diseases, please don’t let these superficial and unwarranted pressures devalue your worth and overlook your value. Please do not risk your health or disease progression by refusing drugs that MAY make life more bearable and manageable. Please. Please. 

Instead of ditching the drugs, ditch the people that say these things. Tell them that they need to be more responsible and worthy of their place in your journey or they risk losing their place in your life. Tell them to take a long look at their priorities and understanding of AIs and its treatments! 

Most importantly, please try to focus on the fact that there is far more to our existence and intrinsic value as human beings then how closely we resemble the current runway models! We must learn to love all that we are and accept what we are not. 

I am lucky that most days I am too exhausted to worry about whether I resemble Jennifer Anniston or whichever starlet graces the pages of vogue. 

It is my own personal belief that what we have inside us is far more valuable since everyone will encounter body changes throughout our life. 

Gentle hugs, 

Trish.