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I can survive chronic pain, but how do I live with it forever?
I’m 19 and I’ve lived with chronic pain for about 6 years. I have fibromyalgia and CRPS, and lately I’ve been struggling with the idea that there may not really be an “end” to this.
I can still be happy. There are so many things I love, people I care about, places I want to see, and little things that genuinely make life feel worth living. I’m actually happiest when I’m able to take life one day at a time, slow mornings, rest when I need it, doing things at my own pace.
But the problem is that the rest of life doesn’t always allow that. I’m in university. Eventually I need to work and support myself. There are appointments, responsibilities, relationships, finances, and all the normal demands of being a person. Whenever I try to keep up with a “normal” life, my body seems to make me pay for it.
One of the strangest parts of being chronically ill this young is that sometimes I feel like I’m already living the life of an elderly person. I literally take some of the same medications my grandparents were taking in their 90s, and I find myself relating more and more to a lifestyle built around pain, medication, doctors, appointments, conserving energy and recovering from ordinary activities.
Meanwhile, I’m 19. I’ve just started university. This is supposed to be the part of life where the world feels completely open, where you’re figuring out who you are, going out, travelling, studying, building a career and feeling like you have endless possibilities ahead of you. Instead, sometimes I feel like I have more in common with someone at the end of their life than other people my own age. There’s a strange grief in feeling like I’ve skipped over a stage of life I was supposed to get to experience.
I’ve been doing this for years, so I know that technically I can keep going. I just don’t know how people come to terms with doing it indefinitely.
Sometimes I even catch myself wishing my illness were something with an endpoint, not because I want to die, but because the thought of having to fight my body for another 10, 20, 40 or 60 years feels impossible to comprehend. I want a life, not just an endless cycle of pushing myself, crashing, recovering, and pushing again.
For those of you who have lived with chronic pain or disability for decades: how did you build a life that actually feels sustainable and worth living? Did you eventually stop measuring your life against what healthy people can do? Did you change careers, expectations, routines, or the way you think about your future?
I don’t really need to hear “stay strong.” I think I’ve been strong for a long time. I genuinely want to understand how people make peace with this and create a life they don’t have to constantly survive.
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Just yesterday someone posted an interesting program that has worked well for them
Go up to the 🔍 search
Type in ACT acceptance and commitment.
In the meantime, hang in there. No platitudes coming from me!
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4 Reactions@gravity3, hi. I had the same thoughts https://connect.mayoclinic.org/discussion/act-acceptance-and-commitment-therapy-for-chronic-pain/
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1 Reactionhannah, like gravity3, I've no platitudes. I lack the depth of your experience and no amount of compassion can give me the liberty to respond to your post Still,:
https://www.fredhutch.org/en/news/releases/2026/07/largest-genetic-study-fibromyalgia.html
https://www.insideprecisionmedicine.com/topics/precision-medicine/tackling-autoimmune-disease-with-cell-and-gene-therapy/
https://www.cartautoimmune.com/
Bless your struggle with luck.
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5 ReactionsI was recommended by my chronic pain doctor to see a pain therapist and he recommended this book
its a good book you can buy it on Amazon,
Why Do I Hurt? Workbook: Neuroscience Education Workbook for Patients with Pain
by Adriaan Louw PT PhD Adriaan Louw
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5 ReactionsI just want to say I can relate to these feelings. I wish I could give advice but will just say you’re not alone. I hope that’s not too much of a platitude.
I read this as Im here hurting and it resonated.
Some other commenters mentioned radical acceptance but id suggest MBSR. Mindfulness Based Stress Reduction. Try an 8 week course. It’s one of the most studied treatment methods for chronic pain. It might be able to help you shift your mindset to that moment to moment headspace and away from thinking of this as a lifelong issue (even if it is). So it has actual pain reduction but great psych benefits surrounding the pain.
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6 ReactionsI am just going to throw this out there. Several years ago I had a car wreck with whip
Lash. Afterwards I could not keep
My tongue still. I was given pregabalin. At the time I did not put this together but developed burning mouth. Spent a ton of money on allergy tests and dental work without relief. It was only when I decided to get off all medication except baclofen that I discovered pregabalin was the cause of the burning mouth and that took 6 years for me to figure it out. I then went 16 months with no burning mouth. Fast forward I came down with shingles and was again given pregabalin even though I cough against taking it but I did take it. I then fought postcshingle nerve pain on face and deep within right ear which was very painful. 5 months after being diagnosed with postcshingle nerve pain I discovered that hydrocone-act was making the pain worse so I got off hudrocone/act which helped some. By Aug 2026 I was having my 4th nerve block without success. I finally decided to dose down the pregabalin to get off of pregabalin. As I was dosing down the pregabalin from 300 mg a day, when I reached 50 mg once a day the postcshingle nerve pain was tremendously relieved. I will finish dosing down and I will get off the pregabalin never to take pregabalin ever again. You might read about your medications and ask your doctor about dosing down any medication that can increase pain. Both hydrocone and pregabalin have increased pain as a side effect. Good luck
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5 ReactionsMy heart goes out to you, and I wish I truly had something concrete to offer…I have had back pain for over 20 years, and tried many things, though I have avoided opioids and steroids—and surgery…best I can do is ‘managing’ my back issue ..i hope that some breakthroughs come along for you, sooner than later !!
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3 ReactionsHi, I’m 73, it’s a mind over matter and finding a person who loves you as you are. After 49 years of marriage and 4 grown kids and 3 grandchildren life is going to be what you want it to be. You have to decide what you want in life, don’t let the pain control you. Get to know yourself and your pain. Learn to deal with your pain. There’s going to be bad days, but you have to overcome them. Set goals early and plan how to get there. There’s light at the end of the tunnel, stay focused.
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2 ReactionsYou have a gift for words. Although I an much older than you, I hear all you are describing.
Please explore the three week Mayo Clinic Comprehensive Pain Rehab Center program. Maybe you have already heard about it. I suggest you look it up online. You will be glad you did. It is an interdisciplinary approach to living with chronic pain. This program has been so successful.
Life changing.
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