Dealing With An Invisible Illness

While enjoying a walk with a friend in the Dandenong Rangers in 2007, I fell and injured my ankle as well as my knee – on different legs. I remember being in a wheelchair for a week and HATING life. I said to my best friend ‘Everyone is looking at me’, disliking the fact that my pain and suffering was obvious. Fast forward to today and I sometimes wish I could carry around scans of my insides so people understood what was wrong with me.

There are many “invisible” chronic illnesses and injuries that people suffer from. These can cause so much strain on a sufferer’s life that they can lose friends and even their job because those around them cannot understand what they’re going through. As a sufferer of an invisible illness, I sometimes feel like I need to put together a brochure listing in dot points the pain and symptoms that I experience day-to-day and during a “flare up”.

Belly selfie from my laparoscopy in June 2016

Belly selfie from my laparoscopy in June 2016

In 2010 I was finally diagnosed with Endometriosis. After years of struggling through symptoms, multiple trips to different specialists and emergency departments – I had an answer. Normally being diagnosed with something isn’t a positive experience however, I had my pain validated. I instantly knew I wasn’t alone as 1 in 10 women suffer from Endometriosis. A path to managing, not curing, my Endometriosis could start to be paved from then on.

Endometriosis isn’t just a physical battle but a mental one as well. The toughest challenge is trying to educate people on what you have and being cautious about how much you say as some males shrivel up like a prune when you mention the word “Uterus”. Yes – Endo (as we sufferers and some medical professionals like to refer to it as) attacks the female reproductive system.

There are many people who do not (not now, nor later down the track) want to speak about Endometriosis or other chronic illnesses. Once when I was explaining to someone what Endometriosis was, they asked “Is it cancerous?”. I said no. “Well then you have nothing to worry about” they said. I beg to differ. I have a lot to worry about considering I nearly had my bowel sectioned and was told I may need a colostomy bag in the future. That is only one part of the damage I have internally from Endometriosis. Just because someone usually won’t directly die from a chronic illness or from pain, doesn’t mean that it isn’t a problem.

One of my many post-operation selfies that I send to family and friends to let them know I'm OK

One of my many post-operation selfies that I send to family and friends to let them know I’m OK

Some days the simple task of walking or standing hurts. I dream of winning the lottery not so that I can fly first class around the world but to pay for a cook, cleaner and gardener because the bad days can be very rough. I can be on the floor in the fetal position due to the pain, dreaming of what I want to cook for dinner but settling for microwaved eggs because I cannot function long enough to complete everyday tasks.

If you know someone suffering from chronic illness or chronic pain, be it a family member, friend or work colleague, here are some of my suggestions:

Be empathetic
Even if you don’t truly understand what is going on, just understand that chronic illnesses cause physical and emotional pain. They are incredibly taxing on the body. Brain fatigued is a common problem from many.

Be honest about how much you want to know
If you have a strong stomach and you’re willing to hear about the gory details, just say so. It can be refreshing to meet someone who wants to talk openly. If you’re not up for the gory details, also say so. “I know you’ve got a bit going on, but just let me know if you’re having a good or bad day and I will understand”. If someone were to utter those words to me, I may kiss them. At the very least give them a big bear hug.

Be patient
If the person you know is constantly bailing on social gatherings due to their chronic illness, don’t stop inviting them out. They will have a symptom-free day at some point and want to let their hair down. Be prepared to go until 6am if that is the case. It can literally be a long time between drinks.

Don’t be judgmental
This one can be hard for some but remember that pain is subjective and that you’re never going to have the full story. I have painful days and don’t tell my husband because I don’t want to whinge. If their absence from work is beginning to be a problem, work with them to see if there is a solution or perhaps encourage them to go back to their specialist. Their condition may have worsened and they could be putting off their appointment. A friendly nudge might be needed.

Enjoy the good days
If you notice that the sufferer is smiling, running or eating pizza, this does not mean they are cured. They could be having a good day, a splurge day or simply pushing through their pain so they don’t come across like Eeyore from Winnie The Pooh for their entire life. Their is a difference between happy and healthy. A sufferer can be happy at the same time their body feels like it is going through a mincer.

If you’re a sufferer of a chronic illness or pain, I get you. I get the bad day where you feel like a burden to people and society in general. I get the days where you feel like the universe dealt you a bad hand, but then you feel guilty for having a pity party with your box of chocolate because you know others have it worse than you. Stay strong, look after you body, maintain your doctor appointments (even though you feel like you see your doctors way more than you see you BFFL or partner) and keep your head up. If you’re the partner or carer for someone with a chronic illness or pain, I’d give you a medal right now if I could. From the bottom of my heart, thank you for looking out for your loved one.

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  • Melanie Moran

    Sometimes behind our bubbly personalities we hide a multitude of problems that nobody knows about. Thanks for sharing your insights Sarah-Maree. I will endeavour to try these hints in 2017. Take care xoxoxo

    • Thanks so much for the support, Melanie. I think everyone has a story; perhaps a lot going on currently or perhaps in the past. Whether or not people choose to share that story is another thing but you’re right – behind the bubbly personalities and smile can be a lot. Take care and keep smiling xx