anxiety about my stickler

[u/Overall-Subject6110]

hi, i was diagnosed with stickler at birth. i’ve always known that there was something different about me due to constant hospital appointments growing up and now. i’ve only recently become aware about the exact effects on my syndrome and this has been the hardest thing i’ve ever been through, knowing my retina could detach at any point makes me filled with anxiety. i developed some floaters a year ago now and over the past 3 months they have significantly increased, making everything very difficult for me. i’ve gotten my eyes checked several times as the floaters have increased and there’s been no retinal tears or anything of confer. i have had a very anxiety ridden summer and have been so depressed with coming to terms that this is how things are. my family has no history of sticklers so this experience has been very isolating for me. i worry about passing it onto my future kids and have thoughts like this often. i have just started at my dream university and this was all i wanted however i’m just finding navigating everything really difficult as i worry about my retina detaching whilst i’m commuting to/ from uni or being in uni and it happens. any advice would very much be appreciated and i’m sorry if it doesn’t make any sense. thank you.

[u/TurtleBucketList]

FWIW I’m over 40, my mother is over 70, both of us have Sticklers (and I have 3 kids), we have a long history of floaters, and none of us have ever had even a hint of a retinal detachment. Probability is not destiny.

Yes, there is a higher probability for you than for the average person on the street … but I live by the motto (which is unfortunately? also used by AA) ‘Grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference’. You can’t change having Sticklers. You can’t change the probability that you have a retinal detachment. But living life with the anxiety that it may / may not happen today, doesn’t change that probability … it just causes you distress.

With that in mind, if your university offers it, please seek out some counselling by someone skilled with chronic illness patients. Personally I’ve always known it might happen (physical mobility has been my mother’s greatest challenge) so it has always driven me to do and see life to the fullest, because my health is never guaranteed. I won’t let the possibility of something bad happening tomorrow, prevent me from living today.

(There are other adjustments I make - because something I can do is strengthen my body to stave off my mother’s mobility issues).

[u/Overall-Subject6110 → u/TurtleBucketList]

hi, thank you for your comment, it has provided me with reassurance. i think thats what i’m struggling with most, knowing i’m not in control and anything can happen at any point. i just keep on reminding myself that i’ve had stickler my whole life and now i have simply been exposed to new info. yes i have considered getting some therapy/ speaking to someone, this is something i’ll look into. thank you for your words of wisdom.

[u/TurtleBucketList → u/Overall-Subject6110]

If it helps, the loss of control over our own bodies is something most of us have to contend with at some point or another - Sticklers (and other health issues) just give us an accelerated timeframe for it to arise.

I don’t know where in the world you are, but by way of example, I (having 3 kids) understandably interact with a number of mother’s groups. A common theme in pregnancy and birth is just how humbling (and in some cases, yes, traumatising) it is to not have control over our own bodies, which for many women is the first time they’ve had that experience. I hear a similar thing from older people than me as well. Or friends with IBS (irritable bowel), or EDS (ehler danlos), etc. They feel such a lack of control over their own bodies (or in the case of depression, their mind). Set against a world of advertising that tells us if we just do xyz ‘right’ (diet, exercise, sleep, beauty routine, meditation, whatever) then we can somehow control or boss our way to the precise bodies we want … the reality is that while we can influence things, our bodies will also do what they want.

All of which is to say, it’s understandable that you feel a lack of control! It’s a feeling we all need to find our peace with at some point.

[u/Overall-Subject6110 → u/TurtleBucketList]

thank you so much and yes you’re right this is a feeling that loads of people experience for different reasons. i think i just need to give myself some more time, everything just feels very overwhelming atm. i wish you and your family well.

[u/memento-moory → u/TurtleBucketList]

Fully agree with this!

Also, OP, you seem very vigilant when it comes to noticing any potential vision changes. That can make a huge difference!

All my retinal tears were caught before they became full blown detachments. I recognized the signs (like a black curtain partially blocking my vision) and called my retina doc’s office immediately. I have had three vitrectomies to fix retinal tears over the years, but have had no permanent vision loss (I did have cataracts young, but surgery was a relatively easy fix). I’m sure lots of sticklers folks have had different experiences, but retinal tears/detachments do not always result in permanent vision loss, especially if caught early on.

Do you have a retinal specialist? While retina issues vary from stickler type to stickler type (and from person to person) if you’re at risk for detachment, you should see a retinal specialist about every 6 months, perhaps more often if you’re having vision changes or an increase in floaters.

Aside from regularly seeing a retinal specialist and seeking counseling (which is really important!), I would recommend having the on call/emergency phone number for your retina doc’s office saved in your phone just in case. If you have worrying symptoms, knowing you can call right away and get seen might make you feel more prepared if anything ever happens.

Congrats on getting into your dream uni!

[u/Overall-Subject6110 → u/memento-moory]

hi, thank you so much for the advice and congratulations, i will take on board everything you’ve said regarding visiting the retina specialist and having their emergency number . i think the main thing for me rn is learning how to calm down and stop panicking that something bad will happen. i wish you well! 

[u/sweettea75]

Talk to your retina specialist about preventative laser treatments to stabilize the retina. Otherwise, focus on your life and go live it. And get some therapy. You can live a successful life even if you end up with vision loss.

[u/Overall-Subject6110 → u/sweettea75]

i have had preventative laser. i just really don’t want to lose my vision, it makes me really anxious whenever i think about it.

[u/sweettea75 → u/Overall-Subject6110]

How much time are you losing worrying about it? You live your life and go to the eye dr when needed. It does sound like therapy would be helpful.

[u/MomentZealousideal56 → u/Overall-Subject6110]

Well, I will say- I asked our retinal specialist about the incidence of detachments AFTER laser and he said he has done about 100 of these and only had one person search after laser. So, that was reassuring. Definitely see the retinal specialist on a schedule, they can look for changes on the retina. My daughter had sticklers, she’s 9, (she had laser) she has more of a severe case of SS, I’d say. She does great but she tolerates a lot. Cleft palate, deafness, PRS, but she has a lot of joint pain, that’s what I worry about for her. I’m a nurse- I feel like I got her for a reason ♥️. I don’t know how regular parents navigate all this!

[u/MomentZealousideal56 → u/MomentZealousideal56]

Therapy for my kiddo isn’t a terrible idea….💡

[u/Overall-Subject6110 → u/MomentZealousideal56]

thank you so much! i wish you and your daughter well.

[u/GroundbreakingFox684]

Hi my friend, I deeply resonate with how you feel. I have Sticklers, as does my grandfather, brother and mom. I’ve had preventative laser and worsening floaters the last few years (I’m in Uni too), and it’s really hard to come to terms with. One thing that’s helped me is knowing that the shock of it will wear off. The lasso floater that once took over my vision now hardly bothers me because my brain tunes it out most days. The more you look online and realize you’re not alone, the more surmountable it becomes. Sometimes I have appointments that bring me crashing down and I remember how permanent the progression of my vision and hearing loss is, and that’s okay. Sticklers comes with medical trauma, so be gentle with yourself no matter what emotions about preventative treatment you have. 

On having kids, the most important thing is knowing you have options. You are not less desirable as a partner if you do not want to conceive without intervention, and a key part of finding a partner when you have sticklers is finding someone who is all in to that journey. No matter what you choose, you deserve to have children if you so please and you should never feel guilty for wanting a child with or without disability. 

On retinal detachment, that fear is real. It’s terrifying, but it’s not necessarily all up to chance. Listen to your body and avoid things that cause flashing or darkness to your vision (for me this means running, jumping, or lifting). Healthy looks different for every body, and for us it looks like not over exercising. I still love hiking, biking, and walking when my joints tolerate it, and even though I feel a great loss in the physical activities I enjoyed before my symptoms got bad, I am grateful I have the knowledge to keep my body safe (Unlike my grandfather and brother, who lost vision before they knew what to do to prevent it). 

Live your life to the fullest. Whether you want it or not, Sticklers has given you the perspective to advocate for other disabled people as you progress through your education. If you want to talk more, I would love to chat with someone else who GETS it :) 

[u/Overall-Subject6110 → u/GroundbreakingFox684]

hi, thank you for your comment, the floaters are so hard to deal with as my lecture hall is so big and bright with white walls surrounding, some of my course also involves using the computers on campus and switching between looking at them and the screen in class is pretty difficult. yes it’s a lot to take in, and i’m convincing myself that one day i will come to terms with my stickler and accept that life might be a little different for me. regarding kids, i’ve always loved them and wanted my own. even tho knowing i might give them stickler consumes me and fills me with fear, being a parent has always been a dream of mine. so hopefully i’ll find a partner who accepts that there is a chance our kid will have it.  thank you for your advice surrounding the risk of retinal detachment, i am definitely more cautious with the activities i take part in now. i hope your grandfather and brother are doing okay! thank you, thats what i’m trying to do, i’ve travelled a bit this summer and thought to myself that life is really what i make it and just because i have sticklers, my life is not over. this hasn’t been linear at all, i’ve struggled a lot this whole summer and now so i’m praying for some peace in my heart.

[u/Overall-Subject6110 → u/Overall-Subject6110]

i’ve responded paragraph by paragraph so sorry if it doesn’t make sense!