This is what true representation looks like💓
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@scolioshit
This is what true representation looks like💓
I’ve been thinking about how much trauma comes with chronic illness
Typically, medical trauma is associated with things such as accidents and serious complications that aren’t chronic. But I think being chronically ill traumatizes us so much more than we think it does. It doesn’t typically feel like trauma, as we most of us have forgotten what it’s like not to suffer.
We often struggle with
Invalidation from those around us, doctors, and over time ourselves. This makes us feel crazy and like we aren’t doing enough when we’re trying our best.
Being denied medication, experiencing side effects from various medications, and severe withdrawals when needing to change medications.
Feeling pressured to overwork ourselves to survive in a society not made with us in mind.
Lack of accessibility.
Complications with insurance and constant phone calls, waiting anxiously for them to be returned.
Judgement, even from strangers. They may think you don’t look sick enough, or you may get stares or see them trying not to look at you. Your self esteem may be affected if you can’t be looked at as just another person.
Being let down. It is not uncommon to get your hopes up for treatment options or an appointment, only to be let down in some way or another.
The pain in itself, fatigue, and other symptoms. Being in a perpetual state of discomfort. Getting used to it doesn’t mean that it’s easy to cope with.
Acceptance that you may be, or will be like this forever as you watch others live normal lives and do normal things.
Isolation and loneliness, and feeling incompatible with society. Humans aren’t solitary by nature, and it will always affect our mental states when alone for too long. Introverted or not, lack of interaction or relatability is damaging over time.
A much higher likelihood of abuse.
Learning details of your illness that are difficult to cope with. This can include mortality rates, low recovery rates, degeneration, lowered life expectancy, heightened risk for further complications, etcetera.
Mourning the life we could have had. It’s said that this is legitimate grief. Denial of your illness(es), anger towards the world, mistreatment from society, or the unfairness of your situation, bargaining and trying everything to cure yourself or try remedy after remedy, depression, and hopefully acceptance eventually.
Additionally, having to give up any aspirations, goals, or plans you may have had before you were sick/disabled. If you aspired to do something you love like dancing and have to give that up and settle for something you may not genuinely enjoy or no career at all, that’s difficult. You feel like you’ll never amount to anything and are a burden.
Self blame and guilt. Shame that we may need to be dependent on others. Wanting to be our own people but not being able to because we can’t do everything alone.
Hospital visits.
Knowing that there are eugenicists that wholeheartedly believe that your life has no value (it does).
The stress of awaiting test results. Negative ones making us anxious, and positive ones possibly being heartbreaking too.
Testing in itself, often uncomfortable, scary, and nerve wracking.
Being infantilized and treated like babies. Sometimes baby talked to, patronized, or clearly not seen with mutual respect as an adult (or teen).
Others feeling that they know your body or needs better than you do.
Fearing the worst during flu season and of course, a serious pandemic. Namely if your immune system is compromised.
That isn’t everything, and you are free to add to the list.
Don’t be so hard on yourself. Even if you aren’t trying your best right now, I’m proud of you. Don’t minimize the trauma that you deal with on a daily basis. You’re doing great.
I saw your post about the Harrington rods not working and it's true. My mom had them put in at age 12 and 38 years later she had to have them removed. Her spine had returned to its pre surgery curves and had actually gotten worse. The wires holding the rods in place had loosened and the rods slipped out of place, causing lower back pain. The wires at the top were left hitting off of nerves and she had to have all of it removed. The same happened to her cousin, cause scoliosis runs in my family.
Thank you for sharing this. Doctors often try to keep this a secret and it's important to warn people about it. I'm sorry your family had to go through that, I know how terrible it is, having had that same experience.
Your illness has not made you ugly
Your feeding tube has not made you ugly.
Your ostomy has not made you ugly
Your cane has not made you ugly
Your wheelchair has not made you ugly
Your oxygen has not made you ugly
Your wig/your bald head has not made you ugly
Your teeth or lack of has not made you ugly
Your body has not made you ugly
Your medications has not made you ugly
Your rashes, blemishes, scars and bruises has not made you ugly
Not being able to shower has not made you ugly
Flashbacks and paranoia has not made you ugly
Changes in your body and brain has not made you ugly
Having seizures has not made you ugly
Your trauma, depression and anxiety has not made you ugly
Your hallucinations, brain fog, and confusion has not made you ugly
Your lack of control over your body, brain, mood and life has not made you ugly.
Please never feel ashamed or ugly about what your illness has done to you, no matter what it has changed it can not change the beauty that you have, so even if you feel like youre not beautiful right now, please remember,
You are beautiful and your disability can never take that from you.
*just gonna add this to the list*
Your brace/ prosthetic(s) has not made you ugly.
Constant trips to the ER or being hospitalized has not made you ugly.
Going to physical therapy has not made you ugly.
Using hearing aids has not made you ugly.
Having a stutter, speech impediment, or being mute has not made you ugly.
You are all lovely. 😊
*adding one more because I have one and know many others that do as well*
Your port / needing to have a port has not made you ugly
*adding a follow up because someone may need it *
Being a spoonie of color / a melanin spoonie / or an indigenous spoonie has not made you ugly
Your resilience is awe inspiring ✨
Going to add some more.
Your change of memory has not made you ugly.
Your lack of being able to have traditional sex has not made you ugly.
Your loss of being able to do a special activity has not made you any less special.
Keep being amazing.
I have a few!! -Your infertility has not made you ugly -Your weight change has not made you ugly -Your food needs have not made you ugly -Your digestive problems have not made you ugly!
Your disabled body is beautiful
My shoulder has been hurting? Like the shoulderblade... Could that maybe be a scoliosis thing? I'm kinda worried, it's only been happening today and yesterday tho... I dunno
That's definitely a thing that occurs in people with scoliosis, yes, but it could be something else, especially since it has been happening for two days only. If it js very painful you should see a doctor as soon as you can, otherwise just wait a few weeks and see if it persists-- you could've just slept in an odd position!
doctors be like. i dont know whats wrong with u so nothing is wrong with u<3
I’m ready to Marie Kondo this fucking body. This spine does not bring me joy
Body by Mother Mother
"yeah don't worry tho I'm doing fine"
Some things it is A-OK to say to your doctor:
No
Wait
Stop
(These are full sentences! You do not need to say any more)
I am not comfortable.
I am not comfortable, I would like…
you to wait a moment.
another person in the room.
everyone else out of the room.
a doctor/nurse of my same gender to preform this test/procedure.
the person who came with me to this appointment in the room.
you to explain everything before you begin.
you to tell me what you are doing as you go.
to do this another day.
I want to get a second opinion before we proceed.
I don’t understand, please repeat that.
I don’t understand, please explain more simply.
Please say that slower/spell that, I want to do some research myself.
I would like to talk to [someone in my life, ie my parents to SO] before making this decision.
No, I do not need to talk to [anyone] before making this decision, I am confidant on my own and am ready to proceed.
What are the side effects of this medication/procedure? What are the potential complications?
Why are you recommending/prescribing this specific thing?
What other treatment options are there? Why are you choosing this?
Would your treatment plan be different if I were a man/woman older/younger had kids, etc? Why are you choosing this one then?
IS there anything I should know about this treatment you have not yet told me?
I understand you say not to, but If I choose to do X, against medical advice, what risks am I running? (ie taking recreational drugs while on medication)
How much will this cost?
Are there any less expensive options/tests we can run first?
Is there a generic of this medication you can prescribe instead?
I think you are not understanding me, I said…
You are not listening to me, please let me finish describing my symptoms.
You are not understanding how much pain I am in, let me clarify…
I do not think it is anxiety/depression/my weight/etc, what else could it potentially be?
I think by assuming it is anxiety/depression/my weight/etc you are ignoring some symptoms. Please listen again and let’s discuss what else it could be.
Please write in my chart that you are not testing for X and why not.
I am in enough pain/this is detrimental enough to my life that non-treatment is not an option. If you can not treat this/figure out what is wrong, to whom can you refer me?
Please write (or help me write) a summary of what we did today so I don’t forget
What are our next steps?
If [what you are recommending] is ineffective, what would my next steps be? What other doctor should I talk to?
What is the best way to contact you if I have additional questions or issues?
Remember, a doctor is a person YOU pay because they know a lot about bodies in general, to help you figure out whats best for YOUR body. It is still your body, not theirs! They know about medicine but you are the expert in your body. Don’t let them act like they own you. Don’t leave if you’ve still got questions, don’t stay if you’re uncomfortable, and feel free to insist on ANY information you want.
I have been thinking of perhaps having a couple more people help run this blog, because I don't have the time to post much this school year... Would.. anyone be interested? I'm still not entirely sure but I'm wondering if anyone would want that.
me: *lays down in my bed*
my entire body: YES! YES! YES THANK YOU GOD!!!!!! YES YES YES YE
Here’s to the people suffering from conditions that primarily affect women and people designated female at birth. There probably could have been a cure or more effective and humane treatment discovered 80 years ago, but sexism happened and people threw up their hands and said “what do ¯\_(ツ)_/¯.”
Keep fighting the good fight for awareness and recognition. Your struggle matters and is deserving of more than a brush-off of “that’s how life is.”
So I was recently diagnosed with scoliosis, but it isn’t that bad my top curve is 2 degrees and my bottom curve is 3 degrees. I was curious if I should bother getting physical therapy since my curves are so minimal, or does it get worse?
It depends on how old you are and if you've stopped developing or not. If youre under 14, i HIGHLY suggest you do try physical therapy, it can progress very fast. If you're under 18, check with your doctor, I think for now, though, you just need to have regular check ups to see if it's going to stay like this, but if your doctor says it can increase then definitely try to treat it as early as possible. From what I know, it will not rapidly increase if youre above 18/stopped gaining height
Edit: upon reconsideration and reading the comments, yes, physical therapy right now is not necessary. But since i dont know anons age, I dont know if they're still growing. So I guess for now you need to have regural check ups (every 6 months) and if it does get worse then go to physical therapy asap.
Edit
I recently discovered I have scoliosis and also noticed how my left rib sticks out more.. Now I don't know if it got worse or if I just didn't notice it before because i didn't know I had scoliosis, do you think is possible? Sorry but I'm getting anxious that it's getting worse even though my doctor said it shouldn't
Very likely that you did just notice it now, I myself sometimes notice new things like uneven collarbones even now. I can't tell you if it got worse by just an ask though. If it has been a few months since your last visit and youre worried, you can go see a doctor. Btw, the check ups for scoliosis are supposedly every 6 months when youre still developing. I don't know about after that because I stopped visiting the doctor at this point, but you could ask them about that.
This whole scoliosis thing sucks. There’s seriously no good outcome whether we have surgery or not unless your lucky. I try to be optimistic but there’s really no putting this in the past.
Hello. This took me a while to answer, because I didnt know how. I'm only 17 myself and I'm really struggling with finding the bright side to anything, and I didn't want to spread negativity. Most days, I agree with you. But you have to remember this, scoliosis is much like a chronic illness, which is something a lot of people have, and there is no cure, and we have to cope with it. Some people are born completely healthy, some are not, and it isn't the end of the world. We can learn to cope with it. We can find people who will love us the way we are, and we can have a happy and successful life DESPITE this. Does it suck that we have this? Yes. Can we live life regardless? Hell yes, my friend. It's okay if you can't do some things like other people can, find your own way.
Remember that you CAN live your life the way you want to despite of this and it'll be okay.. Even if scoliosis makes you insecure, has you in pain and discomfort... Most people have something, we can't be perfect.