Some rambling thoughts here, because we all have been where you are, sometimes often, sometimes for years! It's completely understandable. Some of these are things to try, but please know there's a lot of empathy, too, and no implicit judgement if you decide not to try anything new right now.
I hope this doesn't sound too cheesy for you (some people like way more cheese than others) but while you have had an unusual teen and young adult experience, and it certainly must have been really difficult, your time really wasn't wasted. You will have perspectives that far surpass those in your age group - what's meaningful, which things are worth worrying about
, how to be there for someone, what resilience means, how to advocate for yourself even when you're exhausted, how to get through miserable times one minute at a time, what to appreciate, etc. It might seem like small comfort, but they're genuine accomplishments.
Last year for my birthday, a friend made me a card that read: "Here's to all the places you have been this year, inside and out." I really appreciated that sentiment. I have not been able to leave my room much, but that doesn't mean my life has been uneventful or meaningless or unimportant. I constantly learn and research things online and through books. I support other people through forums and email. I am there for my kid anytime she needs me, at home. I have written things, worked on my mental health, and created artwork and crafts. I have a different life from the one I used to have, and a different life from what I imagined, but I do have a life. Someone mentioned recently - trying to be helpful - that she's so furious that my life has been "put on pause" by this brutal illness. I didn't say anything to her about
it, because I understand the sentiment and have felt the same way at times, but I realized she was wrong. I'm still here, and it's ableist to think that a limited and/or disabled life can't be just as full as a more typical one. I definitely wish things were easier and more comfortable! But my life hasn't stopped.
Stigma and ableism are very real, and deeply internalized for most of us. We undervalue ourselves. We measure our value with how much we can do physically. We buy into an idea of what health is based on images we see in advertising, not based on the people who truly have the most fulfilling lives. Right now, I'm feeling conflicted about
buying a wheelchair. I need one to get around safely when I'm not at home, and I deserve to be safe as I heal! But the way I'm treated when I have used one at hospitals really gets to me, and a part of me hoped I wouldn't get to the point of requiring one. I've done a lot of work on myself and my internalized ableism, but it's not totally gone!
I hear what other posters are saying about
social media being helpful for feeling connected, but honestly I am ambivalent about
that. Even healthy, wealthy, attractive, smart folks who use social media regularly can have their self-esteem and satisfaction with their lives negatively impacted. People don't post about
their struggles and bad days, so everyone's lives seem far better and more exciting and "together" than they really are. But most of us need connection, even if it's imperfect! I recommend connecting with a mix of people - some with chronic illness, but also some with common hobbies and interests.
An app I have found helpful is Curable. It's a web-based app that uses a mind-body approach to chronic illness. (They use the phrase "chronic pain" as a shorthand for all kinds of symptoms, not just pain - I checked with the developers.) The mind-body approach uses your thoughts and feelings to re-wire the neural pathways that cause physical sensations. Look up the concept of neuroplasticity or mind-body healing, or go to Curable's home page, and see if it resonates with you at all. It's a cheap, easy, non-invasive way to have some control over the mental aspect of long-term symptoms and maybe also alleviate some symptoms.
Art therapy activities also can be helpful. If art isn't your thing, then keep in mind you don't have to show anyone.
There's also expressive therapy of other kinds, like writing exercises, music, movement, etc. that you can find online or on YouTube. Movement like restorative yoga or qi gong can be learned online as well, inexpensively or for free, and can boost mood, speed detox, combat deconditioning, etc.
I did an activity this week that I found satisfying: I made a symptom tree, with the stressors that weakened my body initially as the roots, and the infections themselves and the immediate conditions they caused as the trunks, and then the symptoms as leaves. There were so many symptoms when I sat down and really listed them all! When I showed people this, just feeling proud of having organized symptoms by their causal pathways, people got so disturbed! Even people who sort of know what I am going through had no idea of the extent of it. So maybe that's an idea for conveying to your family how you are doing - a visual aid.
How miserable for you that your family is unsupportive. I can relate to the disappointment of having friends just fall away. People prefer to live in denial about
how fragile health can be and how precarious our lives can be, and sick folks like ourselves remind them of those things! It's not your fault that your friends couldn't deal and that your family doesn't get it. But it's crap, and I'm sorry you are feeling so isolated. You still matter.
Some websites are helpful with protocols that don't require you to see a doctor. You've probably looked into most of them already, but two I like are RawlsMD.com, Harold Buhner's site, and the Marty Ross site. Rawls also offers consultations by phone or Skype, and free webinars about
once per month. Some therapists these days also will see clients via webcam, if you think that might help you work on depersonalization, coping skills, and hanging onto enough motivation to keep trying things.
People really like to talk about
their Lyme journeys, but to me that's far too nice a word. It's a slog. But you're not alone, and people do get better.
Sara (POTS, Lyme, ME, HPA axis dysfunction....)