Coping with chronic pain and Disability
Hello All, I am new here and want to share my story, so if anyone else is dealing with something similar, they won't feel so alone.
I am a 30 year old female who has been attempting to find answers to my many medical issues since I was 14. It started with lower back and knee pain, and gradually over the years has turned into widespread muscle and nerve pain. Since I was so young when I started having these issues, it was chalked up to "growing pains" and was dismissed by doctors until I was 17 and had slipped a disc so badly in my lower back that it rendered me unable to walk for weeks (I literally had to crawl everywhere) and the parental units refused to take me in to see a doctor due to me "just wanting attention". My back eventually healed as well as it could on its own, but I continued to fall into a depression while attempting to find anyone who would help without dismissing me. The depression became so bad that when I was 19, I did try to end everything by overdosing on my Anti-anxiety medication. I did not get medical assistance for that either due to the same issues with my parents. Not getting treatment for this has ended up in me suffering from drug induced epilepsy. Since that day, I chose to advocate for myself. I fought for answers and finally was diagnosed with Ankylosing Spondylitis around 5 years ago, and recently have also been diagnosed with chronic Fatigue syndrome, and Fibromyalgia, and Peripheral Neuropathy. It has been a very long and enduring struggle, but I eventually got the answers I was looking for.
If you are also struggling right now, please know that I understand what you are going through, and you will get there eventually. Please know that it is just a short period in your life. My advice is to advocate for yourself, especially if those around you doubt the issues you face, or don't understand what you are going through.
It WILL get better. 💗
@sensibleLion2304 hi, welcome to the Disability Support community. I wrote about self advocacy and agree that we need to use this resource.
https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/SelfAdvocacy_332639/
@sensibleLion2304
Thank you, hearing your story helps lifts me up 💜 i started having chronic illnesses when i was around 14 too and now i still struggle with it, especially because ive been experiencing a flare up recently and its really hard. The thing is, when you are dealing with a chronic illness, you dont just feel the pain physically, but you also have to deal with anxiety and hopelessness. Sometimes i get scared that i'll never feel better and that i won't have a normal young adulthood life like other people (university, making friends, travelling, etc). But i truly hope that we both will heal or at least come to terms with our chronic illnesses. And oh, have you ever experienced envy of healthy people or regret that you used to take your health for granted when you were healthy?
Wishing you the best and sending you strength and healing hugs. You got this! 💙
@pinkKite8784 AS is a tough diagnosis to be given. What have you found helps you feel better and move easier?
@MistyMagic I have found that being kind to myself on my flare days really helps keep me out of a downward spiral. I have been lucky enough to have found an amazing support system in my husband who can sense when I need to take a breather, rest myself and he will take over the project at hand. It is very hard even after this long knowing and understanding my limitations, and I am an extremely stubborn person who feels she needs to conquer the world on her own with no help. It has been very challenging to accept help from others due to this but I am getting better at it. I also find that Hot tubs are my best friend. The weightlessness you feel floating in the warm water is so soothing to the body. I also find that yoga and short leisurely walks help loosen up and tight joints.
@sensibleLion2304 I love hot tubs! I often wonder about the weightlessness of living in space too. . .
@pinkKite8784 I did feel a sense of envy at first. I slowly realized how many people struggle with invisible illness and have found comfort in knowing I am not alone with the daily chronic pain, fatigue, or mental illness that may come along with it. It is quite difficult on those days where I have to use a mobility aid because I do feel like everyone is watching and judging, but it gets easier to deal with it the more I use them. Having a proper treatment plan depending on what you are dealing with definitely slows the progress, but unfortunately for me, I have come to terms with the fact that this is my life and I need to be proud of how strong I am living the life I have. The best advice I could give: Be patient with yourself and try not to compare yourself to others. Everyone is meant to be the way they are for a reason. Our illness only makes us stronger, more compassionate human beings.
@sensibleLion2304
Do you think invisible illnesses are more common than we think? Especially because in my school, everyone looks healthy on the outside and there's even quite a lot of people who smoke or vape and honestly its really saddening, because it seems like these people don't realize that their health is a gift and it seems like that they are just throwing "the gift of good health" away. On the otherhand, meanwhile there's me who wishes to be healthy again. I want to live a normal university and young adulthood life. I want to have a close circle of friends. I'm actually enjoy socializing , it's just that because my health is deteriorating, i haven't socialized much recently and i tend to beat myself up a lot for not being productive/sociable. (I'm also quite studious). Do you have any tips on how to be gentler with yourself?
@pinkKite8784 Yep, I bet you want to shout and scream about them!
Yes!! I believe, in fact I am sure I know that invisible illnessess are more commong, so many don't have a physical visibility.
@sensibleLion2304
I am sorry that you are and were in such pain.
I, myself, don't have chronic pain, but i had a lot of issues with bureaucracy and so, i know that it can be very hard to go through it.
@sensibleLion2304 That's quite a story! While my conditions are nothing like yours, I also have chronic pain because of them...sometimes they flare up; when that occurs, I'm down for the full 10-count.
Advocating for oneself is definitely important...I'm still learning how to do that. It's amazing how many doctors & medical personnel know little to nothing about chronic illnesses. It may not be entirely their fault--the health care system limits what they can do, esp. in the US--but you'd think that a higher education worth six figures wouldn't leave them so lost when they run into something outside a standard diagnosis!
I came across this book a few years ago, and it really helped me.
But You LOOK Good: How to Encourage and Understand People Living with Illness and Pain
There is even a website (which is where I found the book, and I am absolutely NOT trying to sell anything here!) which is dedicated to this subject. It is invisibledisabilities.org. I haven’t been on the site in a long time, but the last time I was, there seemed to be a wealth of information that maybe some of you might find of interest.
It definitely helped me realize that I was not alone!
@mmackinblack
Thank you for the recommendation 😊
Of course!
@mmackinblack thanks I'm hosting an Invisible Disability awareness event here in Disability Support community in October so I'll tag you.
Or if anyone wants to help message me to get more involved ,❤️
Thank you! I’d love to help if I can. So please let me know!
@sensibleLion2304
Hello and welcome. Thank you for sharing. I am so sorry to hear that you have struggled for a long time with pain and you did not receive the support and help that you needed and deserved. Sorry that your parents were not supportive of you when you needed them most. I am glad to hear that you were finally diagnosed. It is extremely frustrating when you are feeling bad and in pain but are not properly diagnosed.
I am living with chronic pain due to extremely scarred corneas which has caused blindness in one eye and partial blindness in the other eye. I also have been diagnosed with fibromyalgia. Arthritis is one of my chronic illnesses which is more or less age related. Like so many others, I have struggled with many illnesses during my lifetime. Depression and anxiety have also been issues for most of my life. I thought I would share a little of my history to let you know that you are not alone. If you would like to talk sometime, please feel free to message me.'
I wish you the best of health. Sending virtual hugs. Take care. Have a wonderfully blessed day.
@sensibleLion2304Thank you for sharing your story, sensibleLion2304. Your journey of enduring pain, being dismissed, and fighting to advocate for yourself is incredibly powerful and inspiring. It’s heartbreaking to hear how tough it was, but your strength in pushing for answers and not giving up is a beacon of hope for others facing similar struggles. Your advice to advocate for yourself is so important—sometimes we have to be our own strongest champions when others don’t understand. If anyone reading this is going through something similar, know you’re not alone, and better days can come. Thank you again for your courage in sharing. 💗