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Stress and depression that comes with chronic illness...

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Sorry if this is very long.

I’ve been struggling with POTS since I was 17 and I am 28 now. Like everyone I go through crashes and other times when I feel okay. At times it’s hard not to ask ‘why me?’ I had sudden onset POTS and went from being a healthy active sociable teenager to bedridden overnight. I often feel like I was robbed of my youth even though I try not to see it that way otherwise I will become too bitter. While my friends were out partying and meeting people and having fun I was either on the couch or in bed crying wondering what was happening to me. It took me 5 years to get a diagnosis - prior to this I was dismissed as being crazy and it all being in my head. 

One of the hardest parts is feeling like no one believes you. Most people including many doctors don’t know about POTS and have little to no interest in educating themselves about it. They cant understand why if I’m at a restaurant I need to leave early because Ive been upright too long and am having chest pain and tachy and feel like I’m gonna pass out. They just think I’m being dramatic or a party pooper. Recently it was my sisters wedding and I had to sit down at a table for 4 hours, my tachy and presyncope was so bad I had to sneak off to the bathroom and lay on the floor for 20 minutes with my legs up against the wall in my bridesmaid dress. Incidents like that help me see the funny side of POTS but the truth is having POTS isn’t much fun at all, and I feel incredibly alone. I have felt 100 years old even before I turned 18.

The worst part is the isolation and feeling like I can’t trust my own body. Everytime I get a new symptom I feel extreme dread wondering if it’s just the POTS or something else, whether I need to go to the emergency room or not, if this is just a little blip or something I am going to have to learn to live with long term. 

I have had two relationships in the 10 years I have been ill and both of them broke down due to my illness. The man I thought I would marry left me a few weeks ago because he couldn’t handle the implications and care aspects of my POTS anymore (even though I try extremely hard to be independent and lean on others as little as possible) Even though the stress from being left again has sparked a new POTS crash I cant blame him because it was immensely difficult for him to deal with this too. 

I feel myself spiralling down into another POTS crash. Any kind of shock or anxiety or emotional pain like a breakup seems to amplify my POTS because mine is hyperadrenergic. At times I worry about the future, worry about whether my POTS is going to worsen as I age, whether i will ever be able to find a partner who can handle chronic illness, whether I will ever be able to have kids and a family of my own since I am so exhausted by even the most menial tasks. I try to distract myself and enjoy the beautiful sunshine and beauty of nature but my body is always nagging me with symptoms that scare and distract me, I can’t get them off my mind.

I don’t want to be a downer but sometimes it gets hard and it feels like outside of this forum, no one really understands. Talking therapy doesn’t help much, I was on fluoxetine and it made my moods worse since I came off it. Valium doesn’t even help the intense dread and anxiety spells I get and recently found out I am allergic to it. I just don’t know what to do anymore. How do you cope with the stress and depression that comes with having a chronic illness like POTS?

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Wow, we have very very similar stories. I got sick at 17 too and prior to that I was super athletic and musical and sociable and tons of water sports and hiking living in Florida. I understand much of what you describe. I've been in some long term relationships but my health is difficult or the person can't handle it. My high school sweetheart and I dated for 4 years and always talked marriage but one day he's like, "I thought you would get better and you're getting worse" and that was it. And I've gotten better and worked really hard at something else and then now I'm bed bound and like you said, none of my doctors care at all, which means I'll have to move in a very sick state just to get medical care. My family is non existent and I don't have many friends. I really understand what you're talking about and I understand feeling "robbed". I won't even get into how doctors treat young females but it's really concerning and scary and there are memories I'd like to shake that I can't. I decided at a young age I wanted to do something in music so started off singing at age 6, then piano lessons, then wrote my first song at 10, and just practice practice which was actually fun for me, extensive study in music theory, learning bass guitar and acoustic guitar; my goal was to become a music therapist and I fell in love with someone and it was like over night I ended up bedridden for a year then homebound for awhile and this was early 20's. 

What I do right now is focus on the things I can do. I listen to some music here and there and watch music shows just to get a taste of what I love. I can still edit photographs from bed sometimes so that is enjoyable for me, I did freelance photography for a period and even if I go outside for 5 minutes in increments during the day with my dogs I will take some photos or go through my old archives. I watch A LOT of animal rescuing stories online that are really only 5 minutes long which just makes the world seem like a better place and makes me smile. I did join a website that isn't running any more years ago when I was homebound and it was for under 40 chronically ill and most of my current friends I met on that website and though we are scattered all over the country, there is an understanding b/w all of us and encouraging even if it's just sending a text or card. I have not found social media to be helpful at all, everyone wants to argue over things and I ended up leaving all that behind b/c it caused so much stress. I do what I can for my dogs, luckily they are super old and low maintenance. I do have one local friend that I've known since sophomore year of high school and he's very understanding and we talk on the phone sometimes and text. Doctors confuse our depression as a primary issue but it's just secondary to feeling so bad all the time. I used to sit at the beach and feel overwhelming peace so I think it's whatever brings you some joy and peace. 

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It's hard dealing with chronic illnesses because it's just not the physical that's affected. It goes with sleepless nights thinking how much time we should have spent doing more than we did, the time we have left, the changes in our loves, and so on. It never ends. I just pray or everyone here.  

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  • 1 month later...

This is an older post but I wanted to send you virtual hugs. As corny as that may sound, I truly wish I could offer comfort. You are too young to have to be tested in this fashion. I’m in my early 40’s and feel helpless to this sudden and very new setback. I’ve only had POTS for a month and other issues preceding that for a year. It’s very hard and like you, I have to try to manage the depression as I noticed I can’t eat when it creeps in, the sleep is poor and the vicious cycle continues. It strikes me that the loss of your relationship compounded everything. I would feel exactly the same; however, you need to be with someone who’s going to be ok with who you are. A girl I went to school with who has debilitating Fibromyalgia and can’t work, met a wonderful man in 2020. He knows what his life will be like while living with her but loves her to bits anyway. I believe that you will find that person. Hang in there. One way to meet a soul mate is perhaps through a support group of fellow dysautonomia ‘sufferers’. You never know 🙂. As for the Heath issues that go up and down, perhaps these setbacks can either be managed or mentally not as ‘impactful’ if you learn how to meditate. My sister took at least 6 months before it worked for her and it’s been life changing. She’s trying to get me to do it to. I do it before falling asleep and I’m terrible at it because my depression and stress consume me but seeing her, assures me that it will start working and I’ll learn how to observe thoughts rather than allow them to consume me. Consider this as well. IMO POTS is an outcome of the vagus nerve not working correctly. The vagus nerve can be stimulated by positive thinking and many other things such as gurgling water, vibrating the tongue for 20 seconds, etc. So if the vagus nerve is happy, the dysautonomia may calm down as well. 🙂

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