Finding it hard to identify with the 'disability' label/feeling not 'disabled' enough
I'm wondering if any others are feeling this way.
I was born with chronic illnesses such as asthma, but then as I got older, I was diagnosed with a couple of more rarer conditions and one of them is treated daily with medication, otherwise worsening fatigue and symptoms would immediately return.
Despite my health conditions, I've never considered myself to be disabled. I go to work (part time), I study (part time, at home), I can walk, talk, take care of myself etc. But I get days where I can't do anything extra because of fatigue, or I have to cancel an event or I'm too tired or in pain to do anything/move. It's rare that I get a day where nothing is bothering me, but that's my normal and I always tell myself that lots of people feel this way, that outsiders would still argue against me being classed as disabled because I lead a fairly normal life on the surface. I know my family would totally argue against it if I said I was disabled, although my nan who has fibromyalgia has a blue badge and my mother has said to my dad that I have invisible disabilities. But everyone else would give me a hard time (I don't have supportive family). I guess disabled feels like a strong word.
It wasn't until my university identified me as disabled and only when my counsellor pushed me to apply for disabled student support (which I did eventually a couple of years into my course), that this label/identity of disability has cropped up. Also in my work, I see lots of people wearing those 'I have a hidden disability so can't wear a mask' lanyards and that's usually only because they have asthma, not the other health complications that I have on top of asthma. Yet they confidently show to everyone they have an invisible illness whilst I do everything I can to hide mine.
I saw a post by a charity that showed a young, seemingly fit and healthy man talk about his condition (same as mine) and his diabetes and refer to himself as disabled/having a disability/invisible illness, which made me think. I saw a visual post that was showing how disability can be invisible and it was released by another charity that's related to my condition, seemingly identifying my conditions as disabilities. I also saw this post below which I found very validating which says 53.6% of disabled people are working and 93% don't use wheelchairs. It also simply says that a mental/physical health condition comes under disability. So I'm not sure if that's implying that all health conditions = disability? What are your thoughts on this visual?
When I applied for disabled student support, my doctor said that I didn't have a disability, yet he ticked yes to the definition of a disability. So I'm always feeling like I'm in middle of this label - neither disabled nor healthy. I feel like I don't belong or identify with either group and I'm in this middle ground with less support or understanding available to me. I know that I am not in good health, but I wouldn't dare to claim I'm disabled to someone because I'd feel fraudulent, that I'm exaggerating compared to someone who can't work or look after themselves, or I'd feel that they would scrutinise my every move, to see if I was indeed disabled enough.
I apologise for my fairly disorganised thoughts, but I just need to get them down somewhere.
So what do you determine as a disability? Do you automatically become disabled if you get a specific label? I'm so confused and lost with all of this and my feelings. I feel like few people understand this.
I think feeling this way is common, I really struggled with it when deciding to take medical leave. I tried to get a disability tax credit and felt like that would have validated the time I wasn't a sudent, wasn't working, was just trying to take care of myself, it would have eased some of the internal stigma.
I think this issue is further complicated by all the various ways disability can be defined. There's the supports where basically fall into what one can/cannot do. One of the most recognized disability models is actually though the barriers put up by others - often as a system, so when viewing it that way it's very much situational.
There was a really great article that I shared to the forums a while ago but the links aren't working to get the article - https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/Disabledornot_52217/
I will try to find it again.
@AffyAvo I updated the old post. Here's a link (there's a 2nd in the updated post in case this doesn't work for you)
http://www.daniellepeers.com/uploads/2/1/0/2/21026078/interrogatingdisabilitysubmitted.pdf
I really identify with your feelings about invisible disability. I look ok, therefore to my family and friends, I am ok. In reality, I am in pain most of the time. I’ve also struggled with depression most of my adult life. I have many good things in my life too, but they are always colored by the pain and depression. I’ve found the people around me are more comfortable with me not sharing this.
@Eliza62 I am sorry you struggle with pain and depression. It sure doesn't help when people are not understanding or supportive.
Do you have supportive people around you? Do you have a support system?
I think may times people are uncomfortable with us divulging facts and feelings about our disabilities and illnesses because they do not know how to respond, be supportive or listen.
I'm glad you have found us here. It's good to have you here.