#new diagnosis

[chronicallycouchbound]

A Guide for Coming into Disability

Note: While this is meant to serve as a guide for people who are becoming physically disabled and people newly recognizing their existing experiences of disability (including chronic illness), I feel that this guide is helpful for anyone, disabled or abled. No guide is one size fits all, but I hope this can help supplement other resources that exist.

Recognizing Disability

The first aspect of coming into disability is conceptualizing what disability means for you. Some initial questions to consider are:

What is disability?

What does it mean to be disabled?

How do you identify disability in yourself or others?

Only you can define what these mean for yourself, but many definitions and models of disability exist.

Loss & Grief

As you begin to transition into a disabled body, the first sign of that change is often the experience of loss. Loss of ability, access to the world, hobbies, community, loved ones, and your sense of self are just some of the types of loss you might be experiencing. Additionally, when being a part of any marginalized community, you are now not only beginning to experience the trauma of discrimination that you’re personally facing but you are also exposed to a communal trauma of systemic marginalization.

Due to the ableist society we live in, every single person is internalizing ableism. Everything we see on the news, in movies, in classrooms, etc. is absorbed subconsciously to create a personalized narrative of the disabled experience. Weather or not that ableism is externalized doesn’t matter, because if you’re not actively dismantling internalized ableism and practing anti-ableism, then that ableism will hit you much harder when you transition into disability. The work to navigate this is constant, evolving and will change with time.

All of this is very heavy. Always unpacking, always processing, always grieving. But it does get easier to navigate, especially with the proper supports. To cope with this, I highly recommend seeking out appropriate support groups (many are online, Facebook, Discord, The Mighty are some great places to look) and considering grief counseling. Through this, remember to be gentle with yourself, cut off people if you need to, set boundaries, and do what you need to to support yourself and keep yourself safe.

Spoon Theory in Practice

A large portion of my disabled experience is simply just learning. Learning about my body, treatments, my limitations, and what I can still do. This dynamic learning often requires more language to explain complex concepts. This brings us to the spoon theory. If you don’t yet know about spoon theory, here’s the original essay by Christine Miserandino.

Spoon theory works to help explain the energy limitations of chronic illness and has been widely adopted by the greater disabled community. Essentially, it is a metaphor that uses spoons as a metric to showcase energy levels in a tangible form. Over time your spoons will change, different activities might require more or less spoons, and recharging your spoons may also evolve. This is why it’s important to use the concept of spoon theory to help you set boundaries with yourself and others.

For yourself, being able to identify your spoon levels and use them appropriately to ration energy can help you avoid falling into pitfalls like the “Boom-Bust Cycle” and better pace yourself. I put this into practice by creating lists rating activities by spoon levels. I have a master list of meals I can eat, categorized by how many spoons it usually takes to make the meal. This way, I can plan out in advance on low spoon days, like when I have PT, and know I won’t have the energy to cook a meal that takes three spoons to make, I can meal plan for the week and buy what I need for a one spoon meal that day. This can also be applied to things like chores and hobbies. I sort my to-do list by priority, and then by how many spoons it will take to do the activity. Knowing your spoon levels can assist in setting boundaries with others as well. I always have a standing appointment on Tuesdays, so I never make plans that day. I always ask for help with certain chores because even if I physically can get them done, I won’t have spoons for the rest of the day or even the week.

Accepting Disability

In order to cope with the loss of certain activities, finding accessible alternatives can go a long way. You might be able to find an adaptive way to still participate in a hobby, like adaptive basketball. There are also so many options for hobbies in the world, and you might be surprised by what works for you now! This is a good time to start to focus on what you can do, with adaptations, vs what you used to be able to/now can’t do.

Mobility aids are a beautiful tool. My advice is if you think that an aid might help you, you should at least try it! If it ends up not helping, or you don’t need it, you can always donate it. I also like to say (and my physical therapist likes to remind me) Just because you can, doesn’t mean you should.

And, of course, ask for help before your body demands it.

Disabled Liberation & Disabled Joy

If you have the spoons and time, you should prioritize learning about our history as a community (Crip Camp on Netflix is a great place to start) Additionally, you can learn about disability theory, models of disability, ugly laws, cripple punk movement, and our rights.

Disabled Joy is a concept that considers our joy to be a revolutionary act in and of itself. I use ‘joy’ here, rather than happiness, because while similar, happiness is based in the root word ‘hap’ meaning chance (as in mishap and happenstance), meaning that the experience itself is based in luck and external factors, and focus instead on the sensation associated with it– regardless of your situation, which is joy. Disabled joy looks like my partner sprinting while pushing me down the sidewalk with the wind in my face. It looks like a perfect day in Sims 4. It comes with safe foods and the healing power of accessible plauygrounds. You find it where it comes, and I hope you can find it in yourself.

Finding Community

The best part of the disabled experience, for me, is our thriving community. When it comes to community building, I always suggest online options first because they’re available 24/7 for most people, and you can reach community from your home. I’ve already mentioned online support groups, but also, online content creators are a great way to find community. If your social media following list is primarily able-bodied creators, especially ones who focus on activities that aren’t accessible to you, it can be really damaging to your mental health. This can help you to find friends who get what you're going through.

Self-advocacy and systemic advocacy resources from our peers and organizations can give you the tools and feel empowered to create change. Seeking resources by and for our community can be lifesaving. You’re reading one right now.

Welcome to the community.

♿️❤️ (wheelchair emoji, heart emoji)

#disability #chronically couchbound #cripple punk #cripplepunk #disabled #disability pride month #disabled pride #disabled pride month #disability pride #becoming disabled #newly disabled #new diagnosis #chronic illness #mobility aid #mobility aids #spoon theory #chronic disability #dynamic disability #chronically ill #bedridden #housebound #disabled liberation #disabled joy #how to cope #being disabled #hospitalization #new to disability #invisible illness #hidden disability #spoonie

[mandana-the-service-pup]

My Rheumatology appointment was great. The dramatic improvement on Methotrexate was the final piece of the puzzle. My Rheumatologist was able to confirm a Spondyloarthritis diagnosis based on my improvement and the X-rays, blood tests, etc. She said my presentation is not typical (probably bc of the EDS & dysautonomia) so Lupus will always need to be on the table and I’m supposed to inform doctors of my increased risk for drug-induced Lupus.

Methotrexate has improved 4-5 years of symptom development but it’s not enough on its own. Hydroxychloroquine and Methotrexate are both dosed based on weight so they can’t be increased. I’m supposed to stay on both medications and use steroids for acute flares (2 pills in the morning every day for a week) If the steroids don’t help then we might move on from Methotrexate to the next DMARD.

I’m so incredibly grateful to finally have a diagnosis that can be treated effectively. I’ve had symptoms my whole life, disabled for the last ten years and have had red flag symptoms for the last several years. To finally have treatment options is such a relief. My Cardiologist follow-up is next week and I can’t wait to finally quell their doubts in me.

#new diagnosis #spondyloarthritis #inflammatory polyarthritis #dysautonomia #orthostatic hypotension #postural orthostatic tachycardia syndrome #gastroparesis #hashimoto thyroiditis #service dogblr #medical alert service dog #health update #rheumatologist #3 years

[my-person-suit-is-defective]

Finally got my official hEDS diagnosis!

I have A Lot of feelings about it and I'm not going to lie, 95% of them are negative, but I am really hoping that this will at least make my access to other necessary specialists at least a little easier

#ehlers danlos syndrome #chronic pain #chronically ill #disability #chronic illness #spoonie #new diagnosis #newly diagnosed #ahahah only took me 5 years to get an appointment to see this fucking specialist #so angry for so many reasons #not the diagosis tho #very happy about that

[apparentlyautisticandanxious]

Getting a diagnosis finally broke the spell my parents had put on me for my whole life. The spell that said it’s rude to be on your phone at dinner or to wear ear plugs/headphones around others. Getting diagnosed finally let me seek out accommodations to make me more comfortable in a world that isn’t built for my autistic brain. It helped me know that it’s okay to not make eye contact with strangers and that I can wear pajama pants all day if I want because the fabric is Right. I am disabled. This society isn’t built for people like me, but I can make my little corner of it a little more bearable.

#asd #autism #aspergers #aspie #autism spectrum disorder #actually aspie #autistic life #actually neurodiverse #autistic adult #sensory problems #adult diagnosis #new diagnosis #diagnosis

[greygullhaven]

Medical Bill Help Needed

I have a Ko-Fi page with donation options and support tier perks if anyone is able to help us out with medical bills and all. If you can spare a few dollars thank you, if you can sign up for a support tier, thank you, if you can share with your followers thank you, if you can spare a positive thought and prayer for us, thank you!

#Ko-fi #medical bills #new diagnosis #diagnosis and its not good #hate having to ask #donations #help needed #community support #every little bit helps #fucking hate cancer

[jennyrjayne]

Me after the diagnosis:

#actually ocd #ocd #new diagnosis #wtf #not autism

[actuallyadhd]

Idk if you're still answering asks but I just wanted to say I've been following you guys since I was 15 or 16 (even sent a few asks though idk how to find them now) and I just got my diagnosis yesterday at 21 :) Thank you so much for doing this it really helped me out when I was younger.

Sent September 27, 2023

I am so glad to hear that we helped you!

I try to get in to answer asks but it's been really spotty for a number of years at this point. Someday maybe I'll be consistent again!

-J

#adhd #actually adhd #asks #anonymous #new diagnosis #thanks

[ceridwyn2]

New Diagnosis

Thoughts for the day (12 July 2023)

So yesterday I went to see my Nurse Practitioner for a belated appointment - missed the last one. Went through some of the bloodwork as my sugars have been elevated for a while so now I have a diagnosis of Type II Diabetes. In a way it’s not surprising - both my parents have the same diagnosis. I’d been losing weight (~15lbs) in 6 months without trying. My NP has put me on Metformin (250mg twice a day to start for 2 weeks, then 500mg twice a day), and testing sugars 2-3 times a day to get an idea of what time of day my sugars are spiking.

I picked up the meds and the Diabetic supplies (monitor, lancets, test strips, sharps container) and started them yesterday. Have the monitor syncing to my phone so I can more easily track testing. I’m so used to having regular sodas and the like (sweet tooth), so I’ve started trying limit sugar intake - body not used to that, bit of a shock to the system. And I can’t drink diet sodas because of the aspartame - I’m allergic - it triggers migraines. So not only a change in dietary intake needed, a new mindset is needed. Will see how this goes.

I also got some more pain prescription medication (Naproxen 500mg) for carpal tunnel syndrome to take on an as needed basis when I have flare-ups.

#new diagnosis #type 2 diabetes #change of lifestyle #adapting to change

[kingofkingsschizo]

Yesterday was the saddest thing I had to do. I had to turn my parents away from visiting me. My adhd is untreated and my diagnosis new. No one understands why I don’t want to be apart of family gatherings anymore but I do. They don’t understand how uncomfortable and out of place I feel being around family sharing conversations with each other when I’m in a deficit. I can’t do it anymore and I’m tired.

#kingofkingsschizo #adhd #life experiences #new diagnosis #trying to cope

[shitpostcentralbabyyyy]

Just got diagnosed with bpd, turns out I really am just 10 trauma responses stacked on top of each other wearing a trench coat

#childhood trauma #bpd #new diagnosis #fuck you mom

[mandana-the-service-pup]

Finally got an apology from my Cardiologist. He didn’t acknowledge that he tried to pass my concerns off as anxiety in my records but he did actually say the words “I’m sorry” in regards to not finding the answer when there clearly was one and that’s such a rare pleasure in the chronic illness world. He also took down my Rheumatologists info so he can refer his patients there so maybe there’s hope for the next young woman who comes looking for answers.

The appointment was short and he skillfully avoided my questions about if the inflammation would have shown up on the echo or CT but at least he seemed genuinely happy I found a solution in the end and I don’t have to have any more appointments with him.

#health update #disability awareness #disabled community #cardiologist #rheumatologist #dysautonomia #postural orthostatic tachycardia syndrome #ehlers danlos syndrome #spondyloarthritis #inflammatory polyarthritis #inflammatory polyarthropathy #new diagnosis #new medicine

[remembersunflowers]

adhd podcast: every morning I do {x} and I always thought of it as normal until I realized it was an adhd coping mechanism

me, having done that this morning: it fucking what now

#personal #adhd brain #self discovery #new diagnosis #adhd memes #adhd is wild my friends

[hoptism]

Okay so hey chronic illness/chronic pain folks when you got your diagnosis did shit get worse for you bc of some psychological shit bc I did and I can’t tell if its just in my head or if me upping my anxiety med dose did this bc those two things coincide

#speaking #chronic illness #chronic pain #new diagnosis #chronic illness help #chronic pain help

[house-of-slayterr]

You guys, after like 50+ hospital stays/ER visits this year, a doctor actually listened to me and didn’t try to tell me it was all in my head for once. This diagnosis won’t solve everything, but it could be a big reason why I’m always so sick. I guess I have Adrenal Insufficiency, so my adrenal glad isn’t producing an essential hormone needed for living.

So the bad thing is I’ll have to be on steroids the rest of my life. And surgery’s may be more risky, which means I probably can’t fully medical transition ever. But these meds should help stabilise me a little bit until I can get into a research hospital and get the rest of my health condition diagnosed. That way I can get on disability, because it’s been almost impossible for me to work full time.

They’re gonna give me one more big dose tonight, via my iv, and if I feel well enough they will let me go home. I’ll just have to take triple the oral dose tomorrow, and then go to the normal does after that. Because I’d rather not stay until the morning if I don’t have to. I have too many important doctors appointments to get to tomorrow that would take months to reschedule.

But that’s the update as of right now. I’m kidnapped overwhelmed with this information because they should have caught it months ago. I’ll update later if I go home.

#adrenal insufficiency #big news #new diagnosis #chronic illness #disabilty #in hospital #medical update #feeling better

[apparentlyautisticandanxious]

When I got my diagnosis I stopped forcing myself to make eye contact. My brain is a much happier place now.

#asd #autism #autism spectrum disorder #autistic life #actually neurodiverse #autistic adult #late diagnosis #late diagnosed autistic #adult diagnosis #diagnosis #new diagnosis #eye contact is the worst

[potato-head-kids]

Also being plural is weird bc it’s like

Alter one: “oh yeah we have a new diagnosis. Okay, we can live with this”

Alter two: “our life is literally over holy shit”

Alter three, the one you’d expect to freak out most: -cries for a bit and then radio silence-

#in order #me #cove #and bat #I think bat might be dormant actually #new diagnosis #vent #negative #plural #system #dormancy mention #idk #ask to tag