The invisibility of chronic kidney disease
The third week in October is an awareness week that highlights people living with invisible conditions.
Do you consider CKD to be an invisible condition? Although there are some physical manifestations of CKD, such as skin symptoms, not everyone may experience them or be attuned to the fact that they're from CKD. If yes, how has the invisibility of CKD impacted you?
Have you and your CKD ever been dismissed by someone because they couldn't see it or thought you looked "fine" from the outside?
I'd love to hear more about your experiences about the invisibility of CKD.
I fully heartily believe that CKD is an invisible disability and it’s one I’m strongly talk about because at the end of the day not all disability are visible. We are suffering side effects of CKD from dialysis to major surgery for a kidney transplant but for those who aren’t they yet have significant pains, high blood pressure to not being able to urinate and of course this takes a toll on the body and it being a long term condition the side effect takes a toll on the body. I believe it’s okay to say yes I have a disability and yes it’s not visible but so isn’t most other disability. I’ve been dismissed so many times and even laughed at about it but I still advocate for myself and shut down anyone who doesn’t see CKD as a struggle enough for it not to be a disability. Here in the UK I had to fight In Court for sick benefits because they said I’m to young, happy and don’t look disabled but my medical records and my everyday struggles living with CKD won me my case and was recognised as someone with a invisible disability.
Hi thank you for reaching back, I love that; knowledge is power! I believe sharing and fighting for your rights as a patient can encourage and help our community, words are a powerful force and I’m happy to be able to support and share my experiences and be an advocate! I’m sorry to hear you’ve been going through a lot of infections, do keep us updated on how things pan out with your results I hope your infections stop and don’t make you feel worse.
Thanks
All the best
Sabad (Team Member)I’m sorry to hear about your struggles, you have worked hard to get off the medication you should be really proud of that. I think that you got a Walker is great if it helps easy your daily struggles and it’s true not all can be seen of your condition but no matter what doesn’t mean your condition and struggles are any unless because they are invisible, yours matter to. I hope things become less difficult and easy your day to day.
Thanks
All the best
Sabad (team member)
Yes
Yes, since people do not see any physical aspects of CKD.
Absolutely. No one realizes the effects CKD has on an individual. Mostly chronic fatigue.
