physical illness and mental health/mental illness and physical health

Today I started seeing a therapist to help cope with my experience of chronic illness.

I feel kind of like a hack, a cheat, or some other no-good thing. I'm actually the healthiest I've been in my whole adult life, and here I am getting therapy about what a hard experience it was to be so sick for so long. But I guess that's the way it goes, sometimes. For the twelve years where I was quite ill, I really needed to be as strong as possible to make it through. If I had doubted my ability to cope with it at any time, I would have fallen apart. I did, at times, wonder how long I could live, feeling as crappy as I did. I thought about killing myself, assured that I would never feel better, and convinced by my doctors that there were no good solutions for my problems. Ultimately, though, I resolved to slog through it. During the tough times I always told myself there would be another day, week, or season where I would feel good. The acute viral lung infection that was making my asthma unbearable would pass. The attack wouldn't kill me this time. Summer would end, and then I'd be able to breathe in the cooler, less humid, less moldy, ozone-free air. I'd meet someone someday who would understand. With medicine, alternative therapies, and the passage of time, I did get over those physical ailments. And through talking with friends, and meeting people within the sickly radical community, I have met people who understand. I think I found one partner who really understood, but I let him go a long time ago.

While I feel a little ridiculous for going to see a therapist to unpack all of this, I realize that there is good reason. Chronic illness is a really big thing, even if we have to make it smaller to make it manageable. It's not necessarily healthy that we have to grin and bear it at school, at work, or around friends. And if people do treat you badly when you're sick, it can really mess you up in the head. There have been times in my life when family members and partners were unable to help me at all, or even made me feel worse about being sick, and it can take time to get over that. I'm really open with people, but I'm not sure if I'm really big on genuinely trusting people, and I think the way I've been treated when sick has something to do with it. There's also issues with how your doctors treat you. Doctors can be really informative, supportive, empowering and provide radical new thinking about your illness (if any doctors are reading my blog... this could be you!). That is of course not always the case. Some of my doctors treated me like my chronic illnesses were no big deal. One said "You feel bad? You should talk to my transplant cases." Yeah, I didn't need a new lung at the time, but I think it's still valid to say it sucked to be living on about 25% lung capacity. Or some doctors would comment on my IBS, saying "at least it's not ulcerative colitis." While it was good that I wasn't crapping out blood, and in as much pain, it was still problematic that I didn't want to be more than 15 minutes away from a bathroom for a little over a decade there.

So here I am trying to work through my own shit. How fucked up is it that I'm fairly healthy and happy right now, and I can't cope with that? It's so abnormal for me that I don't really know what to make of it. If I have a really really good day, I wonder to myself if I'm hypomanic, but then realize that it's probably just what it feels like to be really happy. On a related note, I felt so happy after regaining a lot of my health, as I got a glimpse at how good a normal life could be. I really did feel like the world was a better place. Of course reality sets in again, and you realize you're in the same world you always were, only your position in it got slightly better.

If you're like me, it still takes so much to be healthy, and I feel worn down and so tired tired tired from all of the hell of these years, and all of the extra work of being sick. I feel so bad for telling people I don't want to go out because I'm mentally trying to recover from all of this, or I'm overwhelmed by how hard it is to cook my super-hypoallergenic food for myself, or because I'm secretly still having some sinus problems, some allergy problems, or whatever it is on a given day. Once I got healthy I put the sickness away for a little while, and I'm a bit discouraged that it's still there, just not as bad. I'm so glad I reached out to people, and it has made all the difference in the world for me to have the support of my friends, but I still feel guilty boring them with the details of the pills and supplements I had to take on a given day, the volume of phlegm in my body, or concerns about whether I should still see an immunologist. While I'm "healthy... ish," a lot of my day, almost every day, is taken up by maintaining my health, and thinking about such banal things.

I'm also pretty frustrated by the fact that it was so easy for me to get healthy, but took so long to find out. Had I known I was allergic to milk, I could have cut it out in middle school or high school and have done far less damage to my body. If I had known that antibiotics, steroids, and other prescribed medications were wrecking havoc on my body in unexpected ways, I would have cut them off and tried alternative treatments sooner. If doctors knew anything about probiotics and hypoallergenic diets, I could have been so much better, so much faster. I am frustrated that science can't change its mind on things faster, or consider alternatives more easily. It's like there is this "medical/scientific knowledge" engraved in stone somewhere, and in order to rewrite it you have to prove that your alternative treatment has a whole valid history. You have to create documentation of it through experiments, journal articles, and convincing really important people in the field. Treatments that have been tested through long-term use (i.e. thousands of people have done it and are fine!), like acupuncture, chinese medicine, and probiotics can't be accepted into the canon until they are proven. Just yesterday I was reading an article on alternative and complementary treatments for irritable bowel (IBS) and they warn that none of this has been proven, and that you should ask your doctor first. It's rare that any random doctor knows whether a supplement not accepted by the medical community at large works or not. Most of my doctors have said "if it works, and isn't hurting you, keep it up!" but they never really believe in any of my solutions. The allergy clinic people are very impressed by my recovery, but they're attributing it completely to allergy shots (even though I haven't taken them long enough for them to be effective). As if allergy shots healed my ailing intestines.

I'm also really pissed that it has taken so long to get better. I started figuring out what was wrong in 2005, nearly four years ago. I struggled through my second year of grad school knowing what was wrong, but not having the time or money to take care of it. I spent the first year and a half of my job getting to a place where I had enough money, time, and energy to really take care of it. It took me 18 months to find a house with very little mold. On top of it, I was getting sicker, which was making it harder for me to have the money, time and energy to do anything about it. Funny how that works. Even my monthly over-the-counter expenditures were prohibitively expensive, and then after you throw prescriptions and doctor's copays on top of that, I was flat broke. I'm able to spend more on my health now, but it's still leaving me flat broke.

I'm devoting this next year to getting really really healthy, to doing everything I can to make myself better, but I'm so frustrated that it's taking five years to get better. I feel like that's a ridiculously long amount of time to put a lot of things on "hold" for. And of course, now that I'm healthy my perspective on things is changing radically. It's easy to look back and say "oh, if I'd been healthy earlier, I could have gotten so much farther on that educational/professional/personal goal," or I would have taken up on a certain opportunity, or gone on a trip, or taken a chance with someone, but I think we can't second guess ourselves like that. At this point, as difficult as it is, and as much as I need time to heal physically and mentally, I can only be grateful that I found out when I did, and not later. As easy as it would have been to know sooner, it would have been equally as likely that I would have found out later, like in my 30s or 40s. My parents are just finding things out about their health through me, and they're over 60.

All of this sickly stuff does cumulatively get to a person, over time. You can live a perfectly healthy, happy life with chronic illness; but at the same time, it's good to acknowledge that it's hard, and that you put a lot more work into it than other people. Between reaching out to friends (after finally having to admit how sick I was), and seeking therapy, I think I'm finally finding the support I need and should have sought long ago.