How to deal with cards I have been dealt?
June 30, 2014 5:52 PM   Subscribe

I was always a very high achiever but in my late teens, I was diagnosed with a debilitating chronic illness. I spent most of my 20s severely limited. In my mid 30s now and still struggling with the feeling that life is unfair.

I managed to graduate and even do some post-grad studies. It all took ages because my energy is very limited and most of my symptoms are chronic pain and exhaustion that is completely invisible. I longed to have a normal life so I often pushed and ignored my symptoms and made myself a lot worse.

It's a catch 22. When I listen to my body's limits, I feel nearly totally physically fine. Psychologically, I am miserable and can't stop grieving my missed potential. When I push myself beyond my limits, my happiness is short lived because I get too ill to enjoy my achievements.

I had a few boyfriends that reacted negatively to my illness. They didn't know how to deal with it. Perhaps I wasn't explaining it properly or perhaps they just didn't care enough to understand and stay. I have a large circle of superficial friends and none of them know that I am sick. I always felt that my illness made people uncomfortable so I just stopped telling them. In a way, I almost prefer to ignore it when I am out and don't feel like it's this oppressive weight hanging over everything. I don't want people's pity. In general, people and animals and babies love me. If there are any positives, my illness made me kind and emphatic towards others. I never had problems making friends, it's more me that keeps the friendships casual and keeps people at arm's length. I often feel like there is this invisible wall between me and rest of the world.

Currently I work full time in a job that I enjoy. What nobody knows is that I need to rest nearly all the time I am off work and that I have no social life. If I do go out once in a blue moon, I pay the heavy price of increased pain and fatigue. Even if I met my dream guy tomorrow (and it's very unrealistic given that I don't go out) - I wouldn't be able to cope with energy demands of a relationship.

A part time job wouldn't give me financial independence that I need and I can't let the illness take that away from me. And for what? One in a million chance that I may meet someone?

I guess I am not sure how to deal with any of this. I don't know how and in what way I can accept that I am ill, that I can't do what normal people can. I tried going to support groups but socializing with ill people depressed me even more. Any words of wisdom?
posted by anonymous to Human Relations (18 answers total) 32 users marked this as a favorite
I would say that if you can, find a job that will support you without maxing out your energy. Even if you like your current job, if it's taking everything you've got, that sounds like a problem if you ever want anything else in your life.

Having more energy won't just help you in terms of finding a partner. It will also let you work harder on the other things you want in life.

All that being said, I know that "just find a job that suits you better" can be the most frustrating advice in the world, especially in this economy. It may be that you are lucky to have the job you have. But if you can find something comparable but less physically strenuous, I'd say do it.

If you've got a job you can manage a circle of acquaintances, that's better than some people with your problems can ever manage. Just try to refocus on the things you really want, rather than the OK-but-unsatisfying things you've got now.
posted by Ursula Hitler at 6:24 PM on June 30, 2014

We are all severely limited. We all are horrible at most things, ignorant of most things, blocked by nature or nurture from participating in vast, vast realms of potential human experience.

And some of us obsess over what we can't have, can't experience, can't do. Leave a person in a peaceful, tranquil room, and he might meditate and one day leave in a state of nirvana. Put some bars on the window, though and the same person might decay into a debilitated wreck. It's all in the perspective.

To focus on what can't be had/done/experienced is neurotic and self-defeating. Your mind will very happily keep telling you what's missing. It's only a story....a self-dramatization through which you convince yourself (and others) you're living some tale of woe.

"I want to do what normal people do". That sounds poignant, but, sorry, it's nothing but empty drama. There's no "normal person", that's a mental construction. We're all disabled in a bunch of different ways. If you knew people's internal lives, you'd be shocked by their limitations, their pain, their grief, their blocks, their inadequacies.

The beauty of being human is the opportunity to apply ones free will and creativity to add something awesome to this big collaborative art project we've got going here. We need gnarly football quarterbacks, but we also need kind people who say tender things to strangers. Whatever you have going on, there's need for you, even if the need you fill is very modest (in the long run, affecting 10 people is no less useful than affecting millions. Everything (even the smallest nuance) you do creates the future.

You're not defined by what you can't do. Einstein sucked at sports and was ugly. If he'd spent his life recoiling from those deficits, or defining himself by them, he'd have been unexceptional.

Don't "overcome" or "transcend" your illness. Your illness is not a "thing". It's one of various factors and limitations limiting you. We all have such factors and limitations. The answer is in your title: you play the cards you've been dealt. Within your finite limitations (we ALL work with finite limitations!) you have infinite potential.

I play a musical instrument with only a three octave range. And if I really wanted to, I could work myself into a fury about that limitation....all the incredible things I could accomplish if I could just play an octave higher or an octave lower. But the truth is, I know I could move you to tears with just a single note if I opened my heart all the way and let it rip. We have infinite potential even amid the most severe apparent limitation.

So just open your heart all the way and let it rip. And stop endlessly telling yourself this sad story about your life. Enough of that. Play the notes available to you, rather than wasting time obsessing over the ones outside your range!

I know that I haven't answered your specific questions. But it's my belief that a shift of perspective will make them moot. Your most dangerous disability is your having bought so deeply into the notion of disability. Limitation is not bad, because creativity thrives under obstruction, and creativity is the most beautiful human faculty.
posted by Quisp Lover at 6:27 PM on June 30, 2014 [61 favorites]

I have a friend with fibromyalgia who is in the same predicament you are in. He decided that he would just accept that he would never be in another relationship, because the last time he had one, his partner ended up taking care of him, and giving up her musical career to do so. He let her go because he didn't want to put her through that.

However, if you cannot accept solitude (and that's understandable!) you may want to consider finding a mate who would be okay with supporting you and wouldn't have to give up anything. Have you considered using dating sites, especially ones that cater to people who are disabled or chronically ill?

Another option is to bite the bullet and go on SSI and work less. I bet your chances to meet someone if you have more free time are far greater than one in a million. And work does not have to be the center of your life. There are other things more important than financial independence.

When was the last time you visited your doctor/p-doc? You sound depressed and might need a medication adjustment.

I don't have an autoimmune disorder, but I have challenges that have put me in a similar position to you. I've chosen to work part time. I realize YMMV.
posted by xenophile at 6:34 PM on June 30, 2014 [1 favorite]

Hey, I am very similar to you. Welcome to the club. It is a hard club in which to be a member. I'm sorry you're with me in this boat.

But that doesn't really help. I do have to say that I've had a similar experience with all of my boyfriends except for one of them, who was a really good guy (but still wasn't right for me). There are men out there who seriously do not care about this stuff and will just love you for who you are and not for who you "could be" if you weren't ill. I know because I have met at least one. There are more. I know people with chronic illnesses who are married and have families or who have boyfriends or girlfriends. It does not take a saint to date someone like you or someone like me, it mostly just takes someone with a bit of strength and good coping skills and understanding. Those are things that can be found in dating partners, and they are things that it is good to look for even if you aren't ill.

The big answer you're going to hear here is probably "therapy" and with good reason. You are struggling with the cards you have been dealt and therapy can help you take a good long look at your hand and figure out how to play the game the best you can with the cards you've got. It was very helpful for me when I needed to come to terms with my illness, with the fact that despite my stellar genetics I will never have kids, with the idea that yeah, I have seen what dying is probably going to look like for me and it's not pretty, etc etc. Just talking this out with someone, an objective third party, was a tremendous release. It was scary and hard but it was a lot better than living in misery the way you describe.

Online support groups can be a lot better than face-to-face groups. Have you looked into that at all? You can ignore the Negative Nancy types and focus on people who are more like you, people who don't depress you. There are a lot of super strong people in online support groups who like to participate simply because they are empathetic and want to help other people who are struggling with the stuff they used to struggle with.

I prefer to ignore my illness when I'm out. Who wouldn't? Why would I think about it unless I had to? I personally think there is nothing wrong with keeping it to myself and enjoying myself when I am not in the hospital or taking pills or lying in bed all day because I physically am just too tired to do anything that day.

Perhaps a job that is less demanding will let you focus on the things in life that you love and want to do but currently do not have time for. I don't know. I think that therapy is going to be a crucial first step for working some of this all out, though - it was for me, anyhow.

Best of luck. Being chronically ill is no walk in the park but like you said it has upsides. I am a really kind and generous person (at least I've been told). I love helping people. I appreciate my time on Earth more than I think the average 31-year-old does because I really shouldn't be here anymore; in any other era, I would have died 18 years ago instead of getting treatment for my illness. Which, like all chronic diseases, is incurable and lifelong.

The book "Good Days Bad Days" by Kathy Charmaz is an awesome read about living with chronic disease. It's a well-researched book about how people with chronic illnesses learn how to cope with them over time, and how our lives are constructed. It might be hard to read but it was helpful to me.

All the best. Memail me if you want to talk more. I just... I know where you are coming from and a bit of what it is like to be in your shoes and I hope that you come to terms with it and that is as smooth a process as can be for you.
posted by sockermom at 6:36 PM on June 30, 2014 [8 favorites]

I have often felt this way in my lifetime of dealing with auto-immune conditions. I just started back to college after a ten-year break during which I worked a full-time job that almost killed me and had many, many relapses. I'm encouraged by your saying that you were able to graduate and work on post-grad work, even while dealing with your illness. You are inspiring me, even as you feel uninspired! Life is often like this, huh?

I find that my friends who knew me before age 17 (when I first became ill) don't expect much from me because they know I have the potential to get very ill very quickly, even if I'm in remission from things right now. My friends who know me from adulthood tend to think I have a lot to offer the world and encourage me in a completely different way. I used to be terrified to tell anyone when I was feeling poorly or the stories of the things I've experienced - but it doesn't have to be like this. Friends want to know these things. Because friends like to help. I forget this all the fricking time but it's true.

We're going to be okay. I hate it when people say that. But we are, you know?
posted by Merinda at 6:51 PM on June 30, 2014 [1 favorite]

When I work full time, my health also keeps me from doing anything other than work or rest. I opted to work part-time and deal with the lower standard of living. If your job is really fulfilling for you, stick with what you're doing and reframe your life around the awesome stuff you're doing at work. If it's not, try to determine whether there's any way to reduce your hours so you have some time in your life for other things. It might be worth adding roommates, moving to a different area, etc. if there's a possibility of reclaiming your life.
posted by metasarah at 6:52 PM on June 30, 2014

I also have a chronic illness and the book that has helped me the most so far is How To Be Sick (although I have to say that based on sockermom's description above of Good Days Bad Days, I just ordered it from amazon).

It sucks to have a chronic illness and sometimes the best thing you can do for yourself is acknowledge what's true. But I often think of a story that Kamala Masters told during a retreat I was on a few years ago. She said that when she was first practicing, she went through a very dark period in which she simply did not believe she could continue and was extremely depressed. I can't remember the specific details except to say that her issues were most pronounced during walking meditation. So then in one of her interviews with the teacher, she talked about this and the teacher told her, "When you are overcome with these emotions, stop your walking and stand still. Then reach down and pull up your right sock. And then pull up your left sock. And then go on." She said that she still thinks "pull up your right sock, now pull up your left sock" when she is faced with difficulties.
posted by janey47 at 6:52 PM on June 30, 2014 [4 favorites]

I had a few boyfriends that reacted negatively to my illness. They didn't know how to deal with it.

I'm only going to address this part very specifically because I don't have this sort of chronic physical health problem, but on this count, seriously, you just need to repeat after me: Some people are assholes. Some people would be assholes even if you were well. Years and years ago, when I was young and at the height of my disordered eating, I had a guy tell me I was the fattest girl he'd ever dated. But that wasn't speaking for the whole of men, or the whole of humanity, that was just one particular asshole being an asshole. Some people are assholes, some people are lovely, some people are in between. You can put up a wall and keep everybody out because assholes exist, but it is usually easier to go through life accepting that some of your interactions will turn out to be with jerks, but most will not.

Everybody's different, but I was just telling a friend this the other day: your ideas about how often other people go out may be somewhat skewed since you don't actually hang out with them much. Like, there's all kinds of people with kids who don't have social lives with other grown-ups and lament this constantly. There's plenty of introverts without physical ailments who think they're missing out. There's people with mental health problems. And an awful lot of people who, once they hit full-time jobs, realize that going out three times a week is exhausting and therefore come home every night and watch television.

I don't know how best to figure out what you can cope with, but I just want you to know that however different you feel, the world is full other people who feel similarly cut off and unable to find friends/partners, and a lot of them do eventually get friends/partners anyway. One of the things I love about having friends who also have mental health problems is that they Get It, so seeking other other people with similar problems might be a start.
posted by Sequence at 9:33 PM on June 30, 2014 [7 favorites]

Some people are assholes.

Amen. I'm not very good looking, but for some reason, and without aiming for that result, all my girlfriends have wound up being very attractive (which has been sort of nice, but never really the main thing I liked about any of them). I've always asked each why she liked me so much when most girls - even girls far less pretty - hardly would even speak to me. They've all had the same response: "girls are stupid".

Boys, too, obviously.

It's taken me years to realize my looks are a gift....a filter. If I were handsome, I'd have wasted vast time on a profusion of stupid/assholeish lovers. Good ones would be like haystack needles. Your situation is similar. Candidates are sparse because they're well-winnowed. The ones not attracted are the ones best left unattracted. This leaves the more important question: can you become someone who's a fittingly fabulous, loving, open-hearted, joyful reward for whomever makes it through that (and other) filters to become your partner? That's only possible if (per my posting above) you focus on what you do with what you've got, rather than focusing on what you can't do.

Same for other relationships - friendship, work, etc. Who will you be? Will you be defined by what you lack, by some stupid condition, or by what you do with the infinite freedom contained within the options you do have?
posted by Quisp Lover at 10:03 AM on July 1, 2014 [5 favorites]

Nting Quisp lover.

What a beautiful piece of writing, written just for you. Wow.
posted by misspony at 11:08 AM on July 1, 2014 [2 favorites]

From an anonymous commenter:
Hi Anonymous, I don't know what it's like to have your specific condition, but how you're describing yourself reminds me a lot of what my nervous breakdown felt like. It was like your symptoms condensed into several very dark and painful months (and I'm talking violent vomiting, severe exhaustion, unable to maintain hygiene, and unable to socialize). It's been three years and I am still recovering. I don't put any energy into pursuing romantic relationships for similar concerns as you've expressed here.

I also still don't feel I can be honest about it with any of the people in my life either, FWIW. The people in my life now assume I have trouble finding full-time work (after all, I powered through university and earned a graduate degree by age 26, so it's not like I can't just work like that again, right?). Only my closest friends know that the part-time job I'm holding right now is the first job I've been able to hold in three years without retching violently in the mornings while getting ready. So I hear you about that invisible wall, and all the frustration that comes with being an overachiever whose body won't let her achieve anything.

My airy fairy advice is this: Take a leap of faith and imagine that your body's pain is its most primitive emotional part(s) trying to communicate with you -- the adult ego that has come to be responsible for this body. Read up on Separation Therapy (here's a link to someone's blog about it) and use the technique to establish a dialogue with your body's suffering parts. It seems to me the body just wants to know its brain will listen to it when it's trying to say "enough".

I'm not promising this technique will cure all your problems. Especially not trying to suggest it will override your physical health concerns. I simply think it will help improve your quality of life, and feel less helpless about your capacity to influence what's happening with your body... IF it's something that works for you.

As I've gotten better and better at being aware of my emotions and managing them, I found my quality of life post-breakdown (while still difficult at times) has gone way up. I have less symptoms than before, and I interpret that to mean that every aspect of my body-consciousness feels less reason to act out against me. Much like a child, it acts out the worst when a part feels it has been ignored.

I'll warn you though: I first had to acknowledge and accept that being an overachiever was not serving my highest good. What makes me healthier today is ensuring that whatever I set out to achieve, it speaks to the highest good of every emotional aspect of mine -- especially the most child-like parts. I have big ambitions for what I want to accomplish with my life, but I am keenly aware that my body will not let me have any of it if I don't make sure that *I* am taken care of in every way I needed to be as a child. It's living with full knowledge that everything I say and do impacts the child-like parts of me, who much like real children, are always watching to see if I mean what I say -- if I mean it when I say their happiness is more important to me that even the greatest self-achievement I can visualize.

Of course, on the off chance I'm a real fruitloop, I challenge you to the ultimate litmus test: read Alice Miller's "Drama of the Gifted Child". Read it just to see if it strikes any deep emotional chords. You don't have to be a horrifically abused person to be impacted by her writing. You simply need to have had your child's genuine Self systematically discounted and unacknowledged when you were growing up. When we grow into adults who continue to do this to ourselves, that's when we start to have more and more problems.

FWIW, over the past three years, as I have tackled every issue this self-dialoguing presents, I have slowly and steadily regained my health, my functionality, and self-esteem. I'm really optimistic that in year four, I'll feel open to welcoming romance into my life again. I even think I will be an achiever again -- except a much better balanced one. My body wants to give to me again, but after a lifetime of being ignored by me, I still have some work to do regaining its trust. Anyhow, I do really hope some of this advice helps. I really sympathize with your age and the unfair part... and offer this hokey pokey advice with the best intentions. Take care!
posted by restless_nomad at 12:21 PM on July 1, 2014 [5 favorites]

So for context: I was sick for four years, it was similar to you I think though maybe worse (I wasn't able to work that whole time, and still felt like shit when I stayed in my "energy envelope"), but it was only four years. I was pretty sure I would never improve substantially and my life as I had known it was done. I've been in remission for a year or so, knock on wood. We'll see how it goes.

I never tried in person support groups, it didn't seem a good fit for my illness, my temperament (introvert) or a good use for my limited energy levels. I did however find a good online forum relating to my illness. I won't say it was perfect, not by any means but as sockermom points out I did find like minds and helped develop a greater understanding of my illness, my limitations, and how to manage these a little better.

I found that, as much as I could, acceptance that I was ill and that I couldn't do what normal people could do (and I'm sorry but variations included there are some things that most NORMAL people can do, like stand up long enough to brush one's teeth without nearly fainting or not having to worry about having enough energy to chew one's food, crazy stuff like that) was important for me. I guess it probably helped me feel less emotionally shitty b/c I wasn't focused on the negative as much, but more practically it freed up precious scarce energy that I could either 1) invest in the good things in my life or 2) invest in research and work on improving my health.

Accepting where you are currently does not equal giving up hope that it can change.

As to how to do this, I think the online community helped some. Buddhist philosophy helped (though I did not, do not and cannot meditate, ymmv), especially focusing on their understanding of suffering. Therapy helped, both because my therapist came from a Buddhist tradition so she could help me understand the practical parts of it without my needing to get mired in the more philosophical or religious parts, but also (again as sockermom says) it's good to have someone to help you work through what this means for your life and the grieving process. Because this is a grieving process. Also acceptance isn't a one time thing and your done. It's on again off again, sometimes you'll rail against how life is unfair (and yes, yes, it is completely unfair), and some times you'll be all zen tranquility. But it's still worth it.

As for the interpersonal, this is probably not helpful because you sound like you might be an extrovert so what works for me might not for you, but I preferred being as honest with people about my limitations as possible, at a level appropriate for the level of the relationship. I took the approach that if that caused them to disappear, then I was better off knowing that asap, so I didn't waste any more time on them (quisp-lover's winnowing idea). And the same goes for friends and boyfriends I think, if they can't handle it, to hell with them (though I know emotionally it's not that easy). But Sequence is absolutely right, some people are just assholes, better to find out sooner than later. As for dating, it's complicated at the best of times, this definitely makes it more so. This is something that there will probably be lots of discussion of on a good online community related to your chronic illness, and other patients with the same illness might have better advice.

My personal advice is pretty limited and lame, try online dating, put as much of your personality into your profile as possible (I don't know if you want to hint at physical limitations, but maybe, again see advice from fellow sufferers) and see if you connect to someone. Like not just "they're cute" but if you get an intellectual/emotional connection. I say this as someone who has always sucked at dating, I hated online dating and only did it half way but when I read my now husbands profile my ears perked up, we emailed a bit and he was the only person I had any interest in meeting. We were engaged two months later and I was sick 2 months after that, and he was amazing while I was sick. It was hard, and I even tried to "set him free" for his own good but he said (and I believe) that he was happier with me sick than not being with me. This made it clear to me that I was not my resume and list of hobbies, and for the right person I/you can be an amazing partner even if I'm/you're not physically "normal". Basically what I'm trying to say is keep your toe in, be yourself and you might get lucky. I didn't 'deserve' to meet him from a numbers or amount of time/energy invested in dating perspective, and I honestly didn't expect to meet him, I just got lucky.

Wishing you nothing but the best. You are in an incredibly difficult position but you sound like you are an incredible person as well.
posted by pennypiper at 2:25 PM on July 1, 2014 [4 favorites]

Nthing some people are just assholes. There are guys out there who would not let your illness get in the way of a relationship with you. A close friend of mine has chronic pain and her husband has been really supportive and never stopped loving her. It took me a long time to find my wife, so I don't feel like I have any tips on meeting people, unfortunately, but they are out there.

I also wanted to mention a blog by another friend of mine about her life with chronic pain and fatigue. I know not everyone wants to read the struggles of people in similar situations, but sometimes it can be really helpful so I thought I'd include it.

Hang in there. Good luck!
posted by at home in my head at 3:20 PM on July 1, 2014 [1 favorite]

A friend who has chronic fatigue had to bite the bullet and use a wheelchair or scooter for going out. She was embarrassed but it gave her the freedom to actually socialise.
posted by Mistress at 1:34 AM on July 5, 2014

Where I'm coming from when I give this answer: 30 years of dealing with multiple chronic illnesses. As I sit here right now, I have 12 prescription medications that I take on a daily or near-daily basis. I've got another dozen OTC meds, and probably 2 dozen vitamins and supplements. I have numerous braces for just about every part of the body braces are made for. I have 2 canes, a walker, and a wheelchair. In the last 2 months, I have been in the ER 9 times (once carted off in an ambulance), and seen enough specialists that I've lost count.

I know that this is going to sound really trite; it sounded really trite to me the first time I read it somewhere. I thought, "this idiot doesn't know what I'm going through, has no idea what I'm dealing with." But I'm going to say it anyway, because it changed my life. So here goes.

You can choose to be happy.

That's it. That's all there is. You can choose to be happy. Even while you're dealing with chronic illness, even while you're in pain and exhausted, even while you're dealing with asshole guys who don't appreciate you, even if you're dealing with friends who don't know you're sick (how are they even your friends if they d on't know this major huge thing about you?!?), even when you feel like there's a wall between you and the rest of the world. You can choose to be happy.

A recent example: About six weeks ago, I was diagnosed with a new major medical condition. Attempt #3 at prescribing drugs to manage it resulted in a serotonin storm, which mimicked the symptoms of a heart attack (hence the ambulance). When the paramedics arrived, they started asking the standard questions that all those of us with chronic illnesses get so used to. When they got to the question about drug allergies, they skipped that all-important first word, and just said "Any allergies?" I immediately replied, "Yes. {this drug}, {that drug}, heart attacks, and whatever causes heart attacks." They chuckled and went on with their questions. I felt a little bit better.

I look at it this way: I can be sick and in pain and unable to walk and maybe having a heart attack and be miserable, or I can be sick and in pain and unable to walk and maybe having a heart attack and be happy. Either way, I'm still going to be sick and in pain and unable to walk and maybe having a heart attack. So I choose to be happy.

I'm not saying I'm Suzy Sunshine all the time. I get grumpy and depressed and frustrated, just like anybody. But then I smack myself around a little bit and remind myself that life is about the choices we make; it's about how we CHOOSE to act and react to what we've been handed. And I choose to be happy.

Feel free to MeMail me if there's anything I can do to help. All my best.
posted by The Almighty Mommy Goddess at 7:27 PM on July 5, 2014 [1 favorite]

Hopefully you're still reading this.

In November, I will reach nearly a decade of chronic pain secondary to autoimmune disease but otherwise undiagnosable. So far, at least.

I have learned a few things in that time, some of which may be helpful to you.

1. The only thing you can control are your reactions. You can't control anyone else or any situation, and you will wear yourself out raging and wishing for it to be different.

2. Spoon theory helped me a lot, both in the way I think about my energy resources and how I explain them to others.

3. I was alone, like REALLY alone for a while, and the point at which I was most alone, I found myself in church. My church is one of those that sees your mess, gets in your business and loves you until you're lovable. It's one of the most amazing blessings in my life. If church isn't your thing, there are lots of community groups that could help you feel less alone.

4. This sounds silly, but bear with me. I got on Twitter. I swore never to join and thought it was stupid...until I found a community of people devoted to education and willing to invest in me. After a few months, I met my best friend. I spent time getting to know these people through Google Hangouts every night. My life is 100% different now because of that. They (along with my church) have made my life so much more fun and they make me feel like I'm not a loser who is stuck at home because she always feels like shit.

5. Cats. They are tremendously good for me. Mine are lazy bastards and will sleep with me all of the time.

6. Last year, I commuted 80 miles a day and worked a much longer day and it nearly killed me. As much as I wanted to stay there, I chose to leave because it was just too tough. I paid for it in weekends and vacations being spent in bed.

7. I dated assholes too. When you meet the right person, they won't care that you're sick. It will just be easy and it will give you energy, rather than taking it away. You will meet someone and they will love you. I know that sounds ridiculous and far fetched, but it did to me too when people said that to me a few years ago when I was reeling from the end of a horrible marriage and the loss of a best friend. Now I have a lot more than I ever thought I could have or that I deserve.

If you want to talk, please gmail (same name as here) or memail me. This sucks and everyone needs someone who understands what it's like and is coming out the other end.
posted by guster4lovers at 9:43 AM on July 9, 2014 [1 favorite]

Hi, I would just like to say I empathise with your story so much, & it seems your life & mine draw a lot of similarities (& it makes me feel so much better / not so alone). I am now 27 & have suffered mental illness / chronic invisible illness since my late teens. My symptoms are debilitating & I really don't know how I get by in life. People often don't believe me when I briefly explain to them even just a few of my symptoms.

Despite that, I completed an entire uni degree, started a freelance graphic design business, work full-time & model part time. I moved interstate from my family a few years ago (as a way of dealing with the pain) & like to maintain my independence so I find it hard to let people in; & often they give you sympathy or pity which I try to avoid also.

Over the years I have had people call me dumb / stupid / ditzy & continuously question why Im not working some miraculous, demanding job that I should be capable of doing. Which I don't like either as I like to do things for myself & don't like being told what to do.

I was always a pleasant person growing up & known as the peace keeper. I was always the first to reach out a helping hand to someone in need. I would never walk around without a smile on my face & ever since falling ill I fantasise about suicidal thoughts every day & feel like I am counting the moments until it all ends. I just feel sooo alone. I want to write about it & help people but sometimes you feel too sick to even make any good of it. Definitely a catch 22!

I have also had mental health professionals recommend me to attend support groups but funnily enough, I don't want to be made to feel like more of an ill person than I already am & quite often these can be depressing. Sometimes I like to just try fit in & ignore the problems I face every day because in reality, they are not going to disappear so sometimes its best to just get on with trying to live your life as best you can! Sometimes talking about it all the time seems to magnify your problems even more.

Anyway it is inspiring to see that despite your painful journey, you manage to hold it all together & maintain your pride. All the best in the future for you xxx
posted by tinkatam at 10:57 PM on July 25, 2014

I’ve read your post through several times, and it seems your main complaint is you’re unable to come to grips with your situation. But unless I’m missing something, you don’t really speak to any ways you’ve tried. When we can’t navigate the emotional waters, a wise thing to do is turn to someone who has a rudder. You’re a smart person who’s not being smart.

Your notion of the fairness of life is somewhat ill-conceived I believe. It’s neither fair nor unfair, it’s really quite random. Someone up-thread pointed out that everyone is dealing with problems and you just need to accept your limitations and get on with it. Trying to help but a little Pollyannaish. We all live on a spectrum, some (not most) cruise through a charmed existence, for others every day is a painful struggle. You just long to join that vast majority in the middle, who can get up, go about their day without too much inconvenience, come home, relax, and go to bed. Not asking too much. When we refer to normal, that’s what we really mean, the things that most people, rich or poor, take for granted. Things right now that you can’t do.

So it’s more than understandable that you feel the way you do. You’ve had the misfortune to have been dealt a very difficult life. Difficult but not hopeless, and what you need is a plan (Do you sense I’m about to propose one?).

First, you say if you stay within certain physical boundaries, that you know, you feel well in body but have mental anguish. My guess is you need to stay within those limits and deal with the anguish. Accept that by continuing to exceed those limits, you’re ultimately contributing to your unhappiness. So how to deal with unrealized expectation and desire?

I think you need to come to the realization that things surely won’t always remain as they are. It may be that your medical condition is unlikely to improve, I don’t know, but for sure you won’t always think about it the same way. If you’re unable to come to that realization on your own, you need to seek some help. There’s a lot out there.

The depth and understanding of the responses you’ve gotten here is quite impressive. But you’ve been dealing with this for close to 20 years, do you really think you’ll have an epiphany here that’s going to change your life? Your circumstances scream out for professional mental health intervention. When things are too much to deal with on your own, take action and get the help you need. You're smart, there’s no reason to stay stuck where you are. Act smart.
posted by PaulBGoode at 8:11 PM on October 21, 2014

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