#invisible illness blog

[disabled-bug]

disabled people when their disability disables them

[pixieverse-icedtea]

hot girl summer but its me taking care of my emotional health, spending time under the sun, reading more, finding new things that make me happy, doing things that bring out good versions of myself

[lazosdivinos]

͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏͏𐔌 numbers and extras ！✿˚₊‧⋆˚࿔

𝟬 𝟭 𝟮 𝟯 𝟰 𝟱 𝟲 𝟳 𝟴 𝟵

𝟘 𝟙 𝟚 𝟛 𝟜 𝟝 𝟞 𝟟 𝟠 𝟡

𝟶 𝟷 𝟸 𝟹 𝟺 𝟻 𝟼 𝟽 𝟾 𝟿

para deixar a bio centralizada: (⠀⠀)

para tirar o ���traduzir bio”: ( ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏͏ ͏ ͏ ͏ ͏)͏

para deixar sem nome: ( ؘ ) ( ִֶָ ) ( ً )

[melodymorningdew]

You have inherent worth.

[spaghettimakesflags]

rheumatoid arthritis pride flag

[vampyrdiariez]

Despite the fact that IEP's and 504 plans are (usually) provided to the people that need them, the lack of accommodation for kids that suffer with disabilities or chronic illnesses is CRAZY. I'm nearly a month and a half into school and am already facing issues with grades and assignments because I missed two days of school in relation to my medical problems. A few of my teachers have refused to work with my IEP and denied me my documented, legal accommodations on multiple occasions. The way that our school system and our teachers treat students that need accommodations is just diabolical, we need to do better to provide disabled kids & teenagers with proper accommodations without defiance from school staff.

[a113cowgirl]

I had 3 doctors appointments in the last week AND a call/long conversation with my case manager/care plan manager, and she’s doing her damnest to get me back into palliative care. (For those who don’t know, palliative care is basically hospice for those who aren’t expected to die in the next 6 months.)

Looks like the specialists are finally starting to agree with me… I’m done with trying to find a cure, I’m exhausted from years of surgeries trying to fix the root problem/cause.

I just want to treat the symptoms and try to improve my quality of life as much as I can and focus on comfort and reliving suffering, rather than fighting so hard to fix everything and be cured. I just want to stop suffering so much.

This partially feels like “giving up,” and makes me sad… but the other part of me feels so much relief in finally giving up the fight. I just want to live the rest of my existence in as little pain as possible, and try to prevent more health crises-es and emergencies.

It’s been a lot of years of this… I’m ready to focus on being comfortable and getting my life back a bit. I’m finally coming to terms with that hard conversation a doctor had with me 8ish months ago about “accepting that I will always be disabled” and “coming to terms with a new normal.” At the time, I was so mad at him suggesting that… but now I’m realizing it may be more peaceful for me to go that route. I’m tired of constantly fighting it and spending so much time researching experimental surgeries and treatments to find a miracle cure. I just wanna focus on living.

[kieren-fucking-walker]

Hey folks,

My body is shit and because of my heart condition I've been given a machine to help me breathe, mostly at night but in the day too when I need it.

It's eating into my electricity (the NHS is great but they don't cover running costs.) I'm stretched thin financially as it is, so as grateful as I am that it's helping me breathe, I guess it's adding quite literally to my cost of living.

Anyway if you'd like to help me keep on top of electricity costs my PayPal is here and my Ko-Fi is here.

If you can't (or just don't want to) this isn't for you, but if you would like to do something and can't help out monetarily you could write to your local MP about the importance of the NHS because we all know it's struggling.

Thanks for reading, and now I'm partially a cyborg I'm hoping to be spared in the upcoming robot apocalypse.

[soupandspoonies]

So I just recently saw one of my doctors and it made me start thinking again about internal battles I have to have with myself over my health.

I've been looking for answers and solutions for my illnesses for upwards of 9 years now and throughout that I often find myself wishing they'd just diagnose me to get it over with.

Seeing a rheumatologist and hoping they just tell me it's rheumatoid arthritis or lupus so that I actually have an answer ends up making me feel pretty guilty - like I need to have something wrong with me. I know it's just me looking for answers, but I can't help but feel bad about it.

Does anybody else have this experience? Hoping you just have something wrong with you so that you finally have an answer, no matter how bad it is? How do you deal with it? I've been doing this for a long time and I still don't really know how to deal with it.

I hope people have been well,

Soup :)

[tears-that-heal]

yeah 😭

[pixieverse-icedtea]

if you write me a letter, i will literally keep it for the rest of my life

[snowy-heartsx]

medical;

so check this out;

i have POTS, pseudo seizures, kidney problems, and liver problems. i even have gut issues, heart problems, hormone problems, and untreated autism. along with low vision and an eye condition called nystagmus. even on top of this. i have sensory issues and an eating disorder.

i had an endometriosis removed back in 2018. it is now 2024, i have been told it could be growing back. my lesions are all over my organs.

so don't come into my inbox saying shit when you have no idea what illnesses are beyond the human eye could see. disrespectfully. fuck you.

[melodymorningdew]

@doctordisco12

[bloomingmindfulness]

"If you look back into history, you will see that many disabled people would find themselves in workhouses, asylums or institutions. The public did not see them, and the world was not built with disabled people in mind"

New blog post - Invisible Disabilities week 2024 https://www.bloomingmindfulness.co.uk/invisible-disabilities-week-2024/

Image description - A banner from Invisible Diseases week 2024 that says 'my disabilities might be invible but I'm not!'

[gabbagepatch]

Wasn't a virus ~ 4-3-2024

Okay, so... I got a ~flare~

I didn't know this shit could flare. I figured the nerve pain had stagnated, apparently not. Honestly it's kindof scary, I'm trying to cope with the fear while waiting for the neurologist. I'm having a hard time. I cry almost every night. I'm really tired of dealing with this, I just want to be well. I'm okay-ish. I'm doing things I enjoy, spending time with my loved ones, etc. But at night it still hurts and that's really difficult. I'm very impatient to see the neurologist because I just want them to tell me I'm okay.

Four weeks ago when this started I had about a week of intense nerve pain and vomiting + other unsavory GI issues. Lack of appetite, malaise, brain fog, twitching, etc. It stagnated at a manageable mild-moderate discomfort via twitching and tingling. Then three days ago it ramped up again and last night I had an intense attack that echoed the first flare.

There was certainly some improvement from the first time though. The first time the burning sensation was nearly constant for 2-3 days with multiple bouts of vomiting. Last night after the peak of the flare it was manageable and I was able to get to sleep at the reasonable time. For reference, the first flare I was up until 6am.

I'm feeling worn out and poorly today with some unpleasant sensations in my face but otherwise it's still more manageable than the first flare. Hopefully this means the severity will keep decreasing until it goes away? It sounds weird but I'm a bit hopeful since this time is much easier than the first.

Me and my PCP suspect I have gadolinium deposition disease. The issues began within a week I received an MRI with contrast and my symptoms match it near perfectly. It's not an "official" disease, whatever that means, but if the shoe fits! I'm fighting to get a 24hr urine test so we can know for sure. I think it's kind of ridiculous that it's so difficult to get a test for a substance 15 million Americans receive every year.

My last therapy session is next Tuesday too, so I'll need to start looking for a long-term counselor soon. Another doctor to search for lol. Honestly the appointments make me feel better, like I have a witness and it gives me something to do. A goal. I miss having goals that weren't centered around my health.

I really appreciated my last therapy session, she helped me do mental exercises working through the death of my dog. She also helped me find some coping mechanisms to deal with the fear of having an undiagnosed illness. Her recommendation was to write down my symptoms, especially when they're making me feel isolated.

I'm feeling a lot of guilt about the stress this is putting on my parents. I was crying last night being held by my mom and said, "I'm so sorry, I never wanted to put you through this again."

She replied, "You're not putting me through anything. We're going through this together."

That made me feel a lot better. You can never completely silence the negative thoughts but that certainly lowered the volume. I love my mom.

──────────────────── 〔✿〕 ─────────────────────

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." - Matthew 6:34

──────────────────── 〔✿〕 ─────────────────────

[vizthedatum]

Hey, I hope you don't mind me saying, but I really love how open and forthright you are about your mental health and your journey.

Sometimes it makes me uncomfortable, but that's because the idea of being that open is outside my comfort zone. I think it's something really worth aspiring to - to making that to be inside my comfort zone. So, thank you.

And you know what? (I write after already responding to this person privately) I still feel uncomfortable sometimes, too! It's totally normal. Awareness of our discomfort and understanding where it's coming from is an excellent way to grow. -- Being open doesn't mean it's always easy—there are still moments when I pause and think, "Whoa, am I really putting this out there?" For example, today... I felt awful mentally and physically today - and I've been writing some intense poetry all week. My mental and physical conditions do not make things easy. However, accepting the struggles more and more makes it easier to see all that is going well in my life. But those past moments of shame at putting myself out there remind me how far I've come; these moments are way less frequent now. Other people's criticisms still affect me, but I have also learned I can take up space with my processing. I can also find people who seek to understand me with curiosity instead of judging how I express myself. (In turn, I can work on my defensive behaviors and ask others for clarification.) I have also found freedom in the process—in processing what I'm going through and knowing that I don't always need to be a certain way. And I certainly don't have to be "right" either—I'm allowed to make mistakes, be atypical, and live my life as I feel. I have several hot takes on this blog that do not resonate with others, and I've done a lot of work to educate myself more so I can learn from those experiences. I continue to do work. I also remind myself I don't have to keep aggressively working to heal either - healing can be done in all sorts of ways. --

The cool thing is that when I share those vulnerable bits, they often resonate with others who've felt the same way but weren't sure how to express it. It's like we're all fumbling through this journey together, figuring out how to be more authentic versions of ourselves. So, if you're feeling a bit uncomfortable, you're in good company! We're all works in progress, learning to show up for ourselves and others more genuinely. <3 Thank you for this comment.