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Feeling Ostomistic
Saturday, July 12 2014

There are many disabling and debilitating health conditions that are considered 'Invisible' illnesses.
Now don't take the word 'invisible' as meaning it doesn't exist.
Because they do... Trust me.

But an 'iNVISIBLE' illness is referred to an illness that you can't see with the naked eye,
most often refers to illnesses and diseases that are going on inside of your body.

SOME invisible illnesses are: 
*CANCER *ANXIETY *DEPRESSION *PTSD *CHRON'S/UC *EPILEPSY *PANCREATITIS
*ENDOMETRIOSIS *IBD *HEART DISEASE *RENAL FAILURE *ARTHRITIS *MS *MUSCULAR DYSTROPHY
*AUTISM *MIGRAINES *FIBROMYALGIA and the list goes on!

You would be surprised the amount of judgemental things I hear daily from people.
Now it isn't just STRANGERS that say this, it is FAMILY/FRIENDS too!

10 THINGS AVOID SAYING TO SOMEONE WITH AN INVISIBLE ILLNESS

​1. "But you don't look sick!"....
You tell me that I don't look sick, yet get horrible offended when I get upset at you. When you have been dealing with sickness for a while you tend to get better at hiding that you are sick... By hiding I mean putting on a brave face and smiling and pretending everything is okay.

But it is also important to keep in mind that while i don't look sick on the outside, internally I could be in agony or discomfort- quite often feels like there are hundreds of knives stabbing me internally.

2. "Must be good not to work!"....
You see, just because I currently don't work it isn't out of a choice or because I am lazy. I am far from it. I am a real honest and hardworking person who would love nothing more to be out working again. I don't currently work because a) my doctor's haven't cleared me to return to working, or b) I don't think it is fair that if I am in hospital for lengthy stays (as I often am) that it would be unjust that I be a burden on my colleagues and expect them to cover my shifts when I am sick.  

I hate that I am having to expect my husband to work so hard and that the medical bills and other expenses are piling up. I really feel bad enough about my situation without you making me feel worse. If I COULD work right now I would in a heartbeat, but most employers aren't empathetic or understanding when it comes to employees being sick- trust me!

3. "Maybe it is all in your head"....
It is funny, that although I am often seeing my Doctors or specialists (sometimes weekly) that people still think they can tell me that 'it is all in my head', despite the fact that there is factual proof that this isn't so.... I don't have an illness where I imagine a sickness or imagine that it is debilitating- I live it everyday..... Everyday I am faced with the reality of what living with these diseases has impacted on my life, my well-being, but also how I can manage day-to-day activities.

.....Now on the topic of what is in my head... I know there is certainly a brain up there, as I have seen my brain (along with millions of Australian's) when my brain surgeries were filmed on the RPA tv show.

4. "Surely it isn't that bad"....
I have had several people tell me that "surely it isn't that bad". If it wasn't that bad would I have had to have my entire colon removed at 22, would I have been put through a medically induced menopause at 21? Now I know that some think that Doctors want you to see them or have surgeries as they get rich off of sick people, but I genuinely believe my specialists and have entire trust in their care of me, that they have my best intentions at heart not their own.

Also its not an exaggeration when I say that endometriosis is a bitch! When I get my monthly visitor, guaranteed I will be in bed for days as the pain is excruciating, the nausea and vomiting is debilitating and the bleeding is so heavy that on top of my really low iron levels that it makes me so much more tired.  It also isn't an exaggeration when my Doctors are considering a full hysterectomy due to the pain and complications from my endometriosis.

5. "There are people worse off then you"....
I know there are people with much worse and debilitating conditions then mine, but saying to me that because I am feeling upset and down about everything that was going on or if I need to talk to someone about what I am going through doesn't mean that what I am going through isn't valid enough and that I don't deserve to sometimes have a bit of a down day/week... because you know what ? I do deserve to sometimes be upset because I can't always be strong, I am human, I am trying to be strong, but importantly I don't always have my shit together!

6. "If you get more exercise and lose more weight"....
I know that I am fat/overweight/obese whatever you want to call me, but I am okay with it. Not because I am lazy and don't want to exercise, but because sometimes it is really hard! When I am feeling up to exercising on days that I am feeling more 'alive' I attend a swimming/aqua aerobics class which I love! But  there are many factors that make exercising hard for me whether it be the fact that my joints since the menopause ache and my bones hurt, or that exercise induces the stabbing feeling in my stomach. I know you are reading this thinking "excuses, excuses" but I bet you didn't realise that every night I eat a chicken and salad for dinner or that I never always was the size that I am.

Before I had my brain surgery I was a normal size 14/16 and I was happy, I know I wasn't stick thin but I was happy with my curves and didn't let that define me. I spent 3 months in hospital having multiple brain surgeries with the last 2 months fighting a dealy MRSA infection that was on my brain and throughout my blood. I could have died! The only way they could fight the infection was to pump me through with high doses of steroids used to fight certain cancers which little did I know caused significant weight gain! I was discharged from hospital 40kg heavier. Can you imagine the shock when all the clothes in my suitcase were some gorgeous tight fitting skinny jeans and tops that no longer fitted. If it wasn't hard enough almost dying I had to adapt to how people were treating me.

With every new health obstacle it gets harder and harder to lose weight as the next is more debilitating then the last. But please understand I am trying to do what I can when I can. I am sure if you felt the pain of hundreds of knives stabbing your stomach you wouldn't be exercising either!

7. "Change your diet"....
If only it was as easy to just change my diet and all my health issues just vanished! Instead I would need to change my DNA as that is where my problems lie is that it is genetics that are causing the FAP. Every night I have a chicken salad for dinner and have for the last 3 years. So it isn't a matter of changing my diet and every issue will magically disappear! 

8. "You're just depressed you need to get out more!"....
As much as I hate to tell you, the reason for me being down sometimes or depressed that it has nothing to do with needing to get out more. Have you ever thought that the reason I could be feeling depressed might be that I have had an absoloutely horrible day, or I just might not be coping on that particular day?

But you also don't realise that I suffer from social anxiety that it is hard for me to want to be social or be around other people. But please don't make me feel like being I can't be upset when I don't feel I am coping.

9. "Aren't you feeling better yet?"....
If I was feeling better, wouldn't I know? Sometimes it isn't a matter of just clicking my fingers and everything will be okay. Unfortunately, when I am getting over one health issue another pops up. But what most people don't understand is that most of my conditions are chronic meaning ongoing, and as much as I wish things would get better or that I would get better it isn't reality. It is what it is and there isn't much more I can do except dealing and treating each issue and living one day at a time!

10. "You are just wanting attention/sympathy!"
Time and time again I hear people say that they feel that I am just wanting sympathy or attention... I don't want pity, sympathy or attention! I am open and tell people about what is going on so that they stop asking questions or gossip, or simply because I want to talk about things and to get them off my chest. Having an extensive illness is quite a burden most days and at times I just need someone to chat too. But I also want to help raise awareness of the health issues. If I can tell someone about what is going on with me and my experiences, maybe just maybe they will meet someone one day who too will need some help or advice.

So please think carefully next time you speak to someone living with an invisible illness.

I know a lot of the time people do generally mean well, but there are often times where what you are saying can be quite upsetting and be damaging rather than actually helping. My intention for this post wasn't to offend or upset anyone, but more to raise awareness of how hurtful words can be and to be mindful next time you think you heard of the cure for cancer and that I should go and try it... if in doubt of what to say the more respectful thing can be silence.

 
Posted by: talya AT 12:57 am   |  Permalink   |  Email
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~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

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Talya Goding - Feeling Ostomistic   talya@feelingostomistic.com.au  |  0447 426 860

Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.

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