What if it doesn’t get better?


Although I try not to use the term “disabled” to refer to myself (and prefer to think of myself as simply being different), by mainstream society’s (and certainly my health insurance company’s) standards, I am considered severely disabled. Why would I say that? I’ll be upfront here: I receive financial assistance, which allows me to eat and go to the doctor and have a roof over my head (and go to school and other important things). This is because I cannot work, at least not now, not while I am in college. Even if I’m in undergrad rather than graduate school, and only taking one class at a time. I have tried to work while going to college at the same time, and it took so much out of me that I had little time and energy left for self-care, for sleep and exercise and cooking/eating healthy meals, for spending any time at all with the people I love, for getting the treatment that is as necessary to me as radiation is to a cancer patient. (In my case, my “treatment plan” includes expressive arts therapy, professional organizing at my apartment, psychiatry, physical therapy for the next six weeks, study skills tutoring through my college, and being involved in my local Icarus Project (radical mental health) and Autistic Self-Advocacy Network chapters.)

I have come to a point of peace with this, thankfully, though it did take awhile. And something that has absolutely not been helpful in my path to acceptance of and love for myself as I am has been the pervasive “It Gets Better” message, which originated in the LGBT community as a response to suicides among bullied queer teens, and has since been applied to a number of other marginalized groups including mad and neurodivergent people. I understand that this message can be helpful, maybe even life-saving as it was intended to be by Dan Savage (the person who started it all), for people for whom life has the potential to “get better”, but who perhaps need a little push and a little hope to put in the work that getting there takes. For queer youth in fairly liberal areas, it is in fact likely that judgment for being queer will decrease (if not cease altogether) as they get older and their peers also age and mature. Yet not all queer people are fortunate enough to live in areas where even adults are accepting of the LGBT community.

This message is also a useful one to give to people who are struggling with an episode of depression or anxiety that is likely temporary, a result of some external factor, for example the death of a family member. Though deaths leave scars that can be permanent, the mourning process itself will probably eventually end, and life will return to normal (even if this is a slow process, adding back a little bit of normality at a time). But what about chronic, biological conditions, like clinical depression, bipolar, autism? This is not to say that recovery is impossible, as many people’s symptoms do improve over time with appropriate support and treatment, though it’s worth mentioning that not all do (and frankly, that’s not the death sentence that it’s often made out to be).

I can’t speak for anyone else, so I will refrain from attempting to do so, but I can share my own experiences and perspective. For me, the “it gets better” message ultimately led to disappointment when it didn’t. Over and over and over, people kept telling me that someday, I would be cured, would be able to return to my “real” life, so I just needed to “hang in there” until then. Perhaps these people did not have personal experience with chronic madness, and were sharing what had helped them with past experiences of temporary episodes of depression in response to a difficult external event. I am not at all trying to invalidate their experiences, or claim that one kind of depression is easier than another (depression is really hard regardless of where it comes from), I am simply pointing out that differences exist and they are important. For someone with a chronic condition, focusing entirely on possibilities for the future that might not actually be possible is like telling someone in a wheelchair how fantastic life will be when they’re able to walk again.

What has actually helped me, once I finally realized that focusing on an unrealistic (for me) future ideal only made things worse, was acceptance and love. I love myself, exactly as I am. I love myself even if I am never able to work full-time, or support myself financially, because there is more to life than work and self-sufficiency. This is my real life. I don’t have to wait until I am “healed” in order for my life to start. My life is meaningful now, and I contribute to society in my way now.

This does not mean that I won’t grow and change, as we all do, as I continue to experience new things and learn from them and mature. It does mean, though, that I won’t be waiting around to be happy until I reach some arbitrary standard of outward functionality. I also, as you can tell by the fact that you’re reading this blog post, will not be waiting around until that day to tell my story, either. In my opinion, there is much to learn from all stories, not just the stories of the so-called “inspirational” (ie, those who are able to go from being “severely disabled” to meeting society’s standards for success). There is an implication inherent in which stories are considered worthy of being told, and in the “it gets better” message… that lives are only valuable if and when they do “get better”, reach those arbitrary standards. I refuse to believe that, not only for myself, but for all the people who have inspired me and who my life wouldn’t be complete without but who, to many people, wouldn’t be considered “inspirational” at all.

Do you want to be an ally to people in your life who are mad and/or neurodivergent? I understand that it can be hard to figure out the right things to say and do, I really do. I’ve been on both sides of this. One very important thing to remember is that everyone is different, and helped (or hurt) by different things. Situational depression, for instance, is very different from clinical depression or bipolar (though they often do overlap; biological tendencies can be exacerbated by traumatic events). While it is impossible to know for sure in advance what will be most helpful, something you can do that will help you to figure this out is to ask, and take what they say seriously. Odds are, the person you are talking to has had a lot of experience with others trying to help them in the past, and remembers what worked and what didn’t. Don’t try to push something on them if they say it doesn’t help (unless you already established a care contract with this person that includes that action); remember, no matter how upset or unstable they may be at the moment, people still know themselves better than anyone else does. Check in with them throughout, asking if whatever you’re doing or saying is still helpful, as that may change. If they are not in a place to be able to be especially verbal or directive with you, and can’t articulate any ideas of their own at the time, you may have to make your own suggestions and ask if that would be ok (even a nod or head shake in response would suffice).

While I absolutely don’t fault people who genuinely cared about me for trying their best to support me, I would have greatly appreciated a check-in, being asked if it was helpful to focus on that indeterminate day in the future when everything will magically be better and I will magically not have bipolar, autism, OCD, ADD, LD, or borderline anymore. Had they asked, I would have said no. I would have said I want to focus on making the present the best it can possibly be while still being…well, me. I would have said I want to name all the myriad things that make my life and self already wonderful.


4 responses »

  1. I loved this โ™ฅ You have voiced an angle to mental illness that not many people stop to consider ~ that for some of us, it is more about ‘management’ rather than ‘cure’….You have brought me comfort reading this, as I can relate to what you are saying…I am also considered severe, and my struggles with mental health are life-long, not temporary at all….I have severe anxiety, clinical depression, EDNOS, and after a recent hospitalization, have now been diagnosed with borderline…I am a single parent, and cannot work due to these conditions, so have been placed on disability payment…I have been under the care of the mental health clinic here for the last five years, seeing them weekly, but have been in counselling much longer than that…I guess my point here is that I can really relate to how you feel when people say ‘it will get better’, or ‘you will overcome this’…In the past, these kind of comments have given me false hope, but now I am more realistic, if not discouraged though….Thankyou so much for sharing your thoughts on this.. I look forward to reading more from you ๐Ÿ™‚

    • Thanks for your kind comment! ๐Ÿ™‚ I’m glad you got something out of reading my post. Yeah, treatment means different things to different people, and this is really important to remember. Some people may be able to reduce their symptoms to a point that they no longer need help anymore, while for others treatment is more about management and finding happiness in the life they have. I can’t predict the future of course, but I do anticipate needing to have therapy and psychiatry and some help around the house for the rest of my life, and that is ok with me! Nobody (even so-called “typical” people) goes at life entirely alone; humans are meant to be interdependent.

      • Very true! We are all so isolated as a society these days compared to past eras….Yes, i think I am coming to realize that my treatment is more about management than any kind of ‘cure’ now….I am working on trying to accept this ~ your positive attitude is inspiring ๐Ÿ™‚

  2. Pingback: Friday links, 5/31/13 | Tutus And Tiny Hats

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