Chronic illness doesn't get better... and that's ok

That’s an issue I have explaining my illnesses to people. Like do you realize I’m only 28 and I still have a lot of aging to do? We are waiting for arthritis and other regular old people stuff. What if I need my gallbladder out or something later? Will opioids help my chronic pain and then I’m an addict? People care more about the number of years you have. “You’re too young to use a cane!” “Too young to be taking it easy!” Well I’m trying to pace to make sure I don’t make my life worse for myself later, Karen.

PLEASE never underestimate the value of these rest day videos. To know that there is someone out there that knows what your experience is like is invaluable.

My last therapist told me something that really stuck with me. Now, I don’t remember the words exactly but she essentially told me that if it doesn’t seem like it’s gonna get better, the best thing you can do is just learn how to make living with it easier; Don’t fight it, work with it. And that’s helped- so much.

our "non-better" puts them face to face with their vulnerability. They don't like that.

There’s always a tendency to be told that our problems can be fixed, or will resolve, but they often won’t, be it fatigue, depression, anxiety, or other issues. But we can, with help, learn to live with things and live semi-functional lives. There needs to be better, more realistic education, and understanding of our limits.

My Granddad is 84 and I'm 18, and yet in many ways we have similar ability levels. He's generally very sympathetic, he thinks about how well he was when he was my age, and says it's not fair that I'm so young and already have to deal with all these things he has to deal with now. He says I should be going out with friends at my age, not stuck at home with my Mum looking after me. Honestly I think he's right, but you know, I make the best of it.

I love it when she lets the ADHD thought process show in her videos. I imagine it’s what it’s like to watch me on a meeting at work.

When everyone was stuck at home for COVID, I was kind of hopeful that people would be more understanding about how living life at your house is pretty rough. But I think they've forgotten.

I think we (as a society) need to be having the hard conversations about Long C0v1d.

I've had ME/CFS since I was 12 years old, and I am now 22. Less than a year ago, my ME went from moderate to severe, and I am now completely bedbound. In the past 3 years, I have developed so many new chronic conditions, including RA, POTS, EDS, migraines, etc. It's been hard, and my life has changed drastically several times. Despite all this, I'm the happiest I've ever been. I have an amazing support system, a great therapist, and am surrounded by people who truly care about me for the first time in my life. I've lived in fear of my condition getting worse for so much of my life, and now that it has, there's almost a kind of peace that comes from knowing that the worst has happened and it turned out okay. I'm determined to make my life one worth living, and I am very fortunate to have people around me who wish to do the same. I still have a lot of grieving to do, been kind of running away from that with toxic positivity, but I know I'll get there. Thank you as always for sharing your stories and feelings with us ❤

I have family that constantly ask when I’ll “get better” and “what’s the point of going to the doctor if you aren’t getting better?” I have friends who are also disabled and their families ask the same questions. Its exhausting that in 2024 ppl still don’t understand what “chronic illness” is. It helps to talk to ppl in our community though and confirm mentally that we ARE trying and we ARE thriving to the best of our ability ❤

I feel you! People always saying ‘I hope you’re better’ or ‘are you better yet?’, ‘you don’t look ill though’ 🙃 sometimes it’s sitting with the unknown, the uncomfortable and the darkness. Thanks for your vulnerability Jessi ❤

Replying to people saying "You seem like you're doing souch better!" is so relatable and so so incredibly frustrating.

I wish my parents understood these things. I’ve been struggling with chronic illness and chronic pain since birth (I was born with an Arnold chiari malformation). I also have fibromyalgia, supraventricular tachycardia, POTS, hyper mobility (it causes my hips to dislocate), CPTSD, and I also have a highly compromised immune system. I’m now in my 30’s, but I actually had to start managing my own medications before the age of 10. My mother knows that I need my medications to survive and function, but I can’t even take them in her presence. She makes me feel so, so ashamed and treats me like a drug addict. She will tut and shake her head while saying ‘God I hate that rubbish!’. If I mention needing to take my medication, she will go completely silent, shake her head and just say ‘mhmm’ while avoiding eye contact. I’ve tried to tell her that if she dislikes it, how does she think I feel about it? Yet nothing works. I feel absolutely disgusted with myself every time that I take any of my medications. I’m trying very hard not to feel this way, but it is incredibly difficult to fight this ingrained habit 😔

Jessica’s stream of consciousness, from bed videos, are always so powerful. Thanks Jessica for showing this side of your life. It is so important to show people that they are not alone. :_JessicaHandsHeart:

I totally understand. I have an invisible disability. Two, actually. Deaf and asthmatic. Some days are good,others,not so much

I've been able bodied my whole life.... until now. I seem to have got long COVID and I relate to a lot of the struggles you are describing. Low blood sugar (eating enough food and the right foods!) are huge for making me not feel awful. My coworker has had chronic conditions for a while and between her struggles and your videos I have learned so much about how to be kind and patient and understanding if people have ongoing health issues. But I never realized how soon I'd need them for myself. Learning to pace myself is hard and learning what helps me be more functional has been a journey. Thank you for talking about these things and educating me... I'm far more prepared for this sudden change in ability that I otherwise would have been.

As a young chronically ill person this is strangely reassuring. It's not going to get better and that's ok. College had me thinking "the future will be different" etc but I'm OK with it just being like this. I'm in pain and that's ok.

Thanks for taking the time and energy to put this video out Jess... I have Long Covid -- it has made my Fibro, POTS, and some of my executive functioning struggles from autism worse... actually, it's just been awful - thank you so much for the reminder that I'm not alone - I'm not the only one... and even if I'm not getting "better" - it doesn't mean that only darkness awaits me for the rest of my life. I needed to hear that today... I am grateful for you...

the constant fear of growing old and having the already debilitating symptoms become unmanageable is so real. every time I am confronted with my parents aging I mourn my own future-- if I had life changing symptoms at 10 years old it's hard to imagine what it will be like at 60, or even 50 or 30. hard things. thank you for talking about the grief that comes along with chronic pain!