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Others Understanding Your Invisible Illness - Re-Post

Posted by suzielebrocq

Public washrooms are a struggle for many of us at the best of times. Since COVID-19, and with regulations about how many women can be in a washroom at a time (including standing in line), there is added pressure to an already stressful process.


There were a number of occasions where I had to try and explain to others why I needed to butt (pardon the pun) in front of them when the next available stall came open.


An invisible illness is one that is unseen to the naked eye. People with an ostomy often have a difficult time explaining their struggles to strangers and those they come into contact with on a regular basis. It is even harder when it is a loved one, because, on the outside, we still look the same (amid scars and poop bags). Without any obvious signs of physical injury (such as a cast, using walking aids) it may be difficult for people to understand that there is still something serious happening inside of your body or mind.


This lack of understanding can create even more stress when your family and friends have expectations that are no longer in line with your abilities, energy levels and tolerance. Sometimes, trying to explain your circumstance to family and friends can be exhausting in itself, so you may either push through and overdo it, which can result in serious flare-ups, or pull out of activities all together and begin to feel socially isolated.


You may also feel your mood impacts those around you, leading to feelings of tension, guilt, and inauthenticity. Pain science shows us how our mood and negative emotions can further increase the level of pain we feel.


So, what can you do to help others understand your invisible injury or illness?


Educate others and explain your condition.

Briefly explain your circumstance to them.


A simple explanation can go a long way in helping to explain your condition. Your willingness to talk about your pain and the challenges you face may help you in becoming more accepting of your condition, feel more in control and grow stronger as a result. This discussion will also help loved ones to understand your limits, as well as what they can do to help you.


Make your limits known


To aid in your own healing, it’s important to avoid over-committing and setting yourself up for a roller coaster of flare-ups or blow-outs. Make it known to family and friends that with this condition, you may experience limitations with the level, duration and certain type of physical activities in which you can engage (at least in the beginning). Educate loved ones about the fluctuations in your pain / body and how this variation may mean that you can only commit to a certain part of an event or that you may need to wait until the day of the event to make a decision on whether you can attend. By being upfront about your situation, it will take away some of the stress, pressure and guilty feelings that may otherwise be experienced. By verbalizing your limitations, you can help you set appropriate expectations for others and yourself.


I remember once having a really awkward situation where my husband’s friend kept insisting that we go on a beach holiday with him and his spouse. As a new ostomate I was not ready to show my bag or my scars and being in public semi-naked terrified me. I was unsure how to set a boundary in a healthy way back then, and just ended up crying because everyone kept telling me ‘it will be ok.’ (which in my mind it wasn’t and wouldn’t!).


Surround yourself with facilitators not fixers


Not all health care providers have in-depth knowledge about the challenges physically and emotionally living with an ostomy. Aim to surround yourself with practitioners who see their job as facilitators, rather than “fixers.” Find people who empower you to take control of your ostomy, rather than making you feel like you need to rely on them. Some practitioners may not fully understand living with an ostomy and may make you feel your challenges are “all in your head.” (Read my story – those exact words were used in my medical records). It’s important to have the right people on your team to facilitate your self-management and support you along the way.


Thank you for being a part of my journey and for letting me be a part of yours.

See all blogs by suzielebrocq
May 19, 2021
Deziner : Thanks for sharing this. I am an ostomate. My first surgery (at 16) which resulted in the “bag and belt” type of ileostomy. 16 years later, had my second surgery which was a Koch pouch.
Telling guys or whoever, was not easy. But, had to prejudge people so I could not be rejected. It happened once. Most men were amazed that my life was very positive! And, that was when I had to wear a very heavy, large rubber bag. In those days, Ostomy supplies were not made to be portable; had to wear the same bag over and over.
I wouldn’t want to wear today’s bags even though they are disposable after a few uses.
I remember the leaking. So very painful! I’m having to face a potential 3rd surgery which would result in wearing outside pouch again.
My current surgery has lasted over 40 years!
I’m much older now; not sure how I would recover. My Dr is trying to fix what I have now. I’m currently ill.
I’m praying that I won’t be cut on again.
Again, thanks for sharing. Have a better understanding of what other ostomates are going through today.

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