Missing out on teenage years.

[Marley23]

I was very sick and got diagnosed with pots and gastroparesis when I was 14. It was really scary I had to have procedures done every 3 months and had many different feeding tubes (my body kept rejecting them).
Now im 19, feeling a lot better, but I feel I completely missed out on being teenager. I was always in and out of the hospital, sometimes for over a month. Ive never done any of the things most people my age do. I Got weird looks for my feeding tube, No sleepovers, No parties, definitely no relationships. Im trying to accept that I can’t get those years back, and now that I’m doing better I’m constantly scared it will come back and take more of my life away.

 

[may71]

Sorry that this happened Marley.

Ive never done any of the things most people my age do

There may be good things that you missed out on, but also bad things that you missed.

A lot of people here report experiencing violence, sexual assault, accidents leading to severe injury or disability, and getting addicted to drugs or alcohol during their teenage years, not to mention a lot of heartbreaks and betrayals. You don't really know how things might have been different.

I don't know what pots is at all, and have only a vague sense of what gastroparesis is. You're welcome to say more about it if you'd like.

 

[Holding my breath]

Hi Marley,

I can understand how it must feel like you have lost that time. It is natural to spend time thinking the what ifs. It can happen at any time of your life, either because of decisions you have consciously made or by events that happened where you had little to no control. Each can bring with them thoughts of regret or loss, If there is a silver lining to this, the time you feel you lost, is the same time that so many lost due to various lockdowns and the impact of the pandemic. Your health experience sounds traumatic and I can understand the effects and anxiety it has left behind but it is never too late to do all those things you feel you missed out on.
Why don’t you write a list of all the things you would like to do or experience. Arrange a sleepover or invite friends to a party. It’s easy to feel held back by the past but if you can look towards the future now you can do whatever you want.
Many teens missed out on experiences these last few years, the impact of covid has been so vast. My heart goes out to people of your age who missed so much. My own children lost their uni experience. I’ve told them for years that uni is the best time of your life, and they were sat in a small pocky room watching lectures on screens for hours at a time, completely isolated.
Things are still not back to normal but I hope you are able to grasp some of the opportunities that are available to you now and experience life in its fullness.
Remember there are also plenty of people here who would be happy to chat and listen to you. Keep chatting with us. Xx

 

[Ziggy]

People change, as a child I never got invited to parties and it upset me. Now I'm in my 50s I can't imagine anything worse than going to a party. I used to love listening to heavy metal and now I usually listen to classical music. I vowed I'd never be like my dad, but now I'm ending up being like my dad (rubbish at playing computer games). 19 is close to 14, and 50 isn't, I get that. To me life is a series of goals, I'm gonna climb up a mountain, I'm gonna learn to play the piano and as I get older I'm getting closer to that goal, now the 19 year old you is feeling better than the 14 year old you, so you're progressing - you're climbing that mountain so keep looking forward and not back.

The thing you should never do is believe "the grass is greener...". I've never been in a relationship and the tendency is to think "well if I had then things would have been better for me" but there's no evidence for that, things could have easily have worked out worse for me. I'll never know, so I can have no regrets.

 

[Lady Wolfshead]

I was very sick and got diagnosed with pots and gastroparesis when I was 14. It was really scary I had to have procedures done every 3 months and had many different feeding tubes (my body kept rejecting them).
Now im 19, feeling a lot better, but I feel I completely missed out on being teenager. I was always in and out of the hospital, sometimes for over a month. Ive never done any of the things most people my age do. I Got weird looks for my feeding tube, No sleepovers, No parties, definitely no relationships. Im trying to accept that I can’t get those years back, and now that I’m doing better I’m constantly scared it will come back and take more of my life away.

Sorry to hear that you went through that. Truthfully most people's adolescence isn't that great, but I can see how hard it is to miss out on it. Frankly I loved university the best, and I'm assuming you might still have the opportunity for college or university. Do you feel like you lack friends or social skills? There are actually many books and websites on how to develop your social skills. I highly recommend checking them out.

 

[KM76710]

I was very sick and got diagnosed with pots and gastroparesis when I was 14. It was really scary I had to have procedures done every 3 months and had many different feeding tubes (my body kept rejecting them).
Now im 19, feeling a lot better, but I feel I completely missed out on being teenager. I was always in and out of the hospital, sometimes for over a month. Ive never done any of the things most people my age do. I Got weird looks for my feeding tube, No sleepovers, No parties, definitely no relationships. Im trying to accept that I can’t get those years back, and now that I’m doing better I’m constantly scared it will come back and take more of my life away.

Good to have you with us and I am pleased that you are feeling much better. I hope that you are able to go forward and keep doing well and improving as time goes by because although y ou missed out on things you have time forward for you in which to live and experience and hopefully find friendships and relationship for yourself.

 

[CrossedSeas]

@Marley23 I wanted to reach out because while I was a little older than you when I was diagnosed, I’ve also lived with POTS. So, I really want you to know I hear you. My heart breaks a little to hear what you’re feeling, because I know that pain of missing out and that fear of relapse and setback too. They aren’t easy feelings at all, and I think you deserve so much grace and care as you feel and work your way through them…and a lot of recognition, because what you’ve been through takes a hell of a lot of strength and courage!
I don’t know if this will help, but I always wished someone had told me that it was ok to feel whatever I was experiencing, and that it’s absolutely ok to treat yourself with a lot of gentleness and self compassion as you do. You’ve been through a lot. I feel like that deserves recognition and care.
I hope you have some support on your side in this too. It helped me a lot to have a caring therapist who was willing to learn, and even more so, it has been incredibly healing to connect to other people in the pots/dysautonomia/chronic illness communities. When I’ve struggled the most, I also did a lot of reading about grief and trauma in chronic illness. I wrote a lot of journal entries and some questionable poetry, and giving a voice to what I felt really seemed to help me to process some of those really painful and scary experiences.
I don’t know if this will fit what you’re going through too, but one thing that helped with that fear of relapse is that I actually made a plan for what I would do if one ever happened again. I find that helps me to feel a little more in control and it reminded me that even if I relapse, I won’t go back to that exact same place. I’ve learned more, and I have more tools to cope at my disposal than the first time through. I know that might not fit where you are right now though, so please ignore it if it doesn’t feel right to you though. I trust that you know yourself and your experience best, and what you need right now.
Most of all, just sending a lot of care to you and a lot of respect for you. You are always valuable and worthy of belonging

 

[JDot]

My sister had POTS. I understand it's a pain especially when so many doctors have never heard of it and it feels like you have to explain POTS to every doctor. And it's understandable to worry about the worst. Just know you're in my thoughts, and SF is here for you. You'll always have a place here to share your thoughts and feelings without judgment. And always remember you're more than you think you are.

 

[spiderplant]

Sorry your teen years were jammed up with surgeries. Sounds like there is a good chance those ailments are behind you now. Sometimes people that were sickly as kids/teens end up having amazing lives. Ringo Starr was very sickly as a kid and became a Beatle.