Don’t judge people based on how they look to you or what they say they might have as you never know how wrimg you may be and what serious psychological issues it may cause.
I often get told I am full of it because I look normal to the people that dont know me. However I have been diagnosed with fibromyalgia, chronic pain, chronic fatigue, lower limb dysfunction, musculoskeletal disease affecting my hands knees shoulders and hips, anxiety, depression, agoraphobia, hypertension and asthma. I may also have multiple sclerosis. People are forever telling me I faking it for attention.
I don’t need my condition to get attention when all 3 of my kids have autism, anxiety amd post traumatic stress disorder and the youngest two having a neurodegenerative condition, epilepsy, dysphagia requiring tube feeds etc. Our medications in our family cost over $80pm with PBS.
Sadly chronic pain, fibromyalgia and chronic fatigue are one of those conditions that people either seem to understand, think they understand as their great grannys sisters daughter was cured some how and if we wanted to be cured we could….or they say we are faking it as we look normal. This is not the case. Amd its things like this that make us feel worse when we don’t need that.
I struggled for years as the drs said it was in my head until I finally found a dr that understood what I was going through and is doing all they can to help.
To you I may look normal but that is because I can smile and fake it. I have grown used to this. My sensored “ok” day in reality would be similar to someone’s “curl up in bed and cry” mode. I may look normal to you but there are things you don’t know as they are my personal issues but if you read them you may realise that many people wouldn’t fake pain to endure this:
A. If I have to walk further than 5 steps or stand for longer than 30 seconds I am generally in so much pain I am crying on the inside. By the time it is over I am in tears and I often have to recuperate for a few days by not being able to move much. This greatly reduces the times I can go out.
B. I need the disability car park that I have a permit for even though I am not elderly. I have a disability and I need my wheelchair (however I happily give old people disabilitu parks as hubby can help me further from the door.
C. I cant cut up a meal due to my finger pain. My husband does this. It is sweet that he is so considerate and I love him for it but it still upsets me.
D. I need help with dressing, bathing and shaving my legs. I can’t even get on ahd off the toilet alone so I dread the times I have no one as it takes me a long time to get there or I have to ask someone else gor help.
E. In order to regain my independence I have to start learning to drive a moified vehicle as I was deemed unfit to druve a car unless it as hand controls. The lessons aren’t cheap and neither are yhe modifications. I can get one funded but in reality we need both funded as we drive the smaller vehicle when.its just us and my kids and the other is for when hubbys kids are over or when we need to take my girls and my wheelchair somewhere. At any guven time hubby may have a black out panic attack and i need to be able to take over. At the moment we are dependent on others helping which often falls through. I will also be subjected to yearly medicals for the rest of my life.
F. My two girls and I are in wheelchairs. The two girks need an adult each pushing them which limits activities on weekends as their therapists refuse to help us get funding for a double wheelchair which would enable us to go out as a family (my wheelchair is powered).
G. I am not raking it in on Centrelink benefits like most seem to think.
H. There are days when I literally cannot move as the pain is radiating through my entire body to the point that I feel like I am on fire.
I. The chronic fatigue makes me so tired yet I struggle to sleep.
J. I feel depressed because I feel like my kids sexual abuse by my ex (not their dad) was my fault. Every nightmare I have ovee him or every time the kids scream out in the night it drives the guily. He abused me too but I thought I could take is as the bruises faded, if he forced himself on me I could zone out, if he wouldnt give me access to my mimey it was ok, if i was shut off from mates it was ok as I had him…it didnt matter that he hurt me as i still had him and wasnt alone like I feared having 3 kids with disabilities……yet my justifications meant the silent abuse my children endured while he overdosed me on pain killers went on for longer than it should have and I feel inadequate as a mum.
K. I have breakdowns because I feel like a failure yet everyone still tries to judge me.
All i want is to raise awaremess out there that if someone says they have an issue dont fob them off or dismiss them as it may be the last thing the need. The kinds of conditions that don’t make us anything other than ok can be a tickimg time bomb. Be mindful of thid and dont get put out if advice is noted but not used as often we’ve tried the latest cure…..
But never judge someone based on their looks as you have no idea what it might do.
Posted by clarebear1983, 4th November 2015