September 10-16 is Invisible Illness Week and Suicide Prevention Week.
In their first effort at writing together, bloggers Amanda, Marisa, and Sara
each weigh in on three different topics related to invisible illness
and/or suicide prevention and awareness.
Living with an Invisible Illness
This week, there have been a lot of things to think about. It’s Invisible Chronic Illness Awareness Week. My friends with Inflammatory Bowel Disease (IBD), Fibromyalgia, Lupus, and so many other invisible diseases have taken loud and proud to the internet, advocating for their condition and their community, bringing light to the things that they quietly endure, day after day, week after week.
My story isn’t quite that clean cut.
I am living with an invisible illness. One that will affect me in part, or in whole, for the rest of my life.
My illness does not have a name.
It has symptoms. It has incredible agony. It has comparisons to formally labeled and recognized diseases.
Having an undiagnosable, invisible illness is overwhelming. It’s exhausting. It’s harmful – physically, and mentally. It comes with a stigma. With doubts. It comes with far too many people who don’t believe me.
When I got sick three years ago, everybody was sure it was IBD. A few non-invasive tests later, I was dismissed with some pain medication. For almost twenty-four months, I suffered in silence. My symptoms came in phases – sometimes lasting months, sometimes only lasting days. During these times, I had to be picked up from my city apartment and brought back to my mom’s house in the suburbs, where she could help take care of me, watch over me, and do the things I couldn’t relative to comfortable living (figuring out what I could eat, when, and how; doing laundry; changing my sheets). Last summer I was feeling stronger, and perhaps even like things might have been under control. I moved away from home, to a new state, to start graduate school. I was hospitalized four times that semester.
I transferred home, moved back into my mom’s house, and committed to putting my health first. I existed for a few months – never good, never on deaths doorstep. Somewhere… in the middle, but closer to the bottom. At that point, I was used to fighting through each day, to struggling just to exist.
In March, I ended up in the hospital for a long time. I was pumped full of every drug in the book, underwent a large majority of tests available to the GI world, and was released – heavily medicated and without any further understanding of what my body was doing than when I was admitted. For nearly six months now, I have bounced from doctor to doctor, specialist to specialist, test to test. I’ve been required to under-go three psychological evaluations. I’ve tried way too many medications to count. I’ve wanted to give up more times than I’m comfortable admitting.
So, here we are. In the middle of September. We’re promoting invisible chronic illness awareness week, and I find myself a little lost. For my friends, although their diseases are invisible, they are wonderful advocates within their communities, they have become proud to talk about their health journeys, and to educate others on the conditions they live with. What do I do? How do I explain the nightmare I’ve been living in? How do I bring my undiagnosed, invisible illness out into the light? Nobody wants to hear a laundry list of my symptoms, or the meds I’ve tried, the hospitalizations I’ve endured, the months of laying alone in my bedroom, feeling like the only person in the world falling through the cracks.
I don’t know the answer to that question. But I do know how to write. So today, we bring invisible illness to light … whether or not it has a name. Whether or not it has a face. Whether or not we’re comfortable or able to talk about it. Today, we raise our hands, to show our friends, and our families, and strangers we’d one day love to meet that they are not alone.
About Amanda: Amanda writes this blog and lives with an undiagnosed illness affecting her gastrointestinal system, in addition to Fibromyalgia, Chronic Fatigue Syndrome, and Interstitial Cystitis. She has had one hell of a year, and somehow, is still standing (or actually propped up on the couch by pillows). In the last few months, Amanda’s recent foray into online communities and support groups for those suffering medical ailments has brought some wonderful and irreplaceable friendships into her life. The more she talks with others who write with a passion, read fervently, manage their hurt, and reach-out with others, she has become inspired to write more, to talk more, to do more. Currently she has become a little befuddled by where she fits in, as she doesn’t yet (and honestly, may never) have a label for the pain and other symptoms she experiences, but her friends have encouraged her to share her story. Her biggest hope is that by writing, others will find themselves feeling a little less alone.
Some of the Psychological Impacts of Living with an Invisible Illness
It is invisible illness week and I wanted to spend a little time talking about how having a disease that no one would know about or suspect unless I told them, has affected me emotionally and to a large degree, physically.
Since I was diagnosed at the age of 13, I look different basically every time I go out. My weight has fluctuated 60lbs due to medication, surgery, illness, and I suppose a non-traditional eating disorder. My hair is sometimes thinner depending on how much stress I am under, my skin is sometimes very bad because of stress and medications. Because no one would know what I have been through just by looking at me, I find myself subconsciously doing things to make it known that I am not OK. I say subconsciously because up until recently, I actually did not realize the reason behind why I was doing what I was doing.
I will just come out and say something that I have only said out loud to a couple people – I want the world to know what I have been through and the hell I continue to deal with day in and day out.
And because ulcerative colitis, kock pouches, and ileostomies can be hidden, which in many ways is a good thing, I find myself looking for alternative ways for people to understand what I have gone through. I truly want to stand up on national television and tell the entire world, especially those people that were in my life and whose friendships I lost. My ex best friend, I will call MM, is someone who I lost because we “were in different places.” I was a year behind her in school because of all the surgeries, hospitalizations, etc. I have lost many friends over the course of my life, but this one, I will never forget. It is because of people like her, that I want to seriously stick some people in a room and keep them in there until they understand the enormous toll ulcerative colitis has taken on me, and what the lives of people who have Crohn’s disease or ulcerative colitis have to deal with each day.
It is strange in a way, because I was always such a private person, I liked that my illness was invisible. I liked that only those people I trusted enough to share with, would know my story. I never wanted anyone to know anything I was dealing with, or what my body and mind have been through. Now, I want the world to know, which makes having an invisible illness difficult.
When the world looks at me and sees me as a healthy 26 year old, I take it as that person is minimizing what I have been through, and continue to have to deal with everyday. I know that is not the intent, I know the comments about me gaining weight are meant to be positive (since I was very underweight), but I internalize them as “so glad you are healthy and everything is fine now.” I think that is what has happened because I have been suffering in silence for so long, with an illness that is very difficult to talk about, and one that will go undetected to your average person. I am not saying I wish I had a disease that was visible to the whole world…that, clearly, would not make me very happy either. It is almost like a lose-lose situation. I like the fact that I can hide things from people when I don’t feel comfortable sharing, yet I want everyone to know the struggles I have had to endure.
Living with an invisible illness has in many ways, forced me to make it a visible illness. Since I realized long ago that I had no control over my disease, and that nothing I did or didn’t do mattered, I went searching for the things I could control. In my case, that was my weight. Ulcerative colitis is a tricky disease for many reasons – one being that the focus on food is enormous. In a lot of ways, IBD is all about food…what foods are good for you, what foods are manageable, and what foods will land you in the ER with a blockage. It is because I have had to micromanage every single thing I put in my body, coupled with not wanting to hear the “you look so healthy” remarks, that I developed an untraditional eating disorder. I don’t know what else to call it. I don’t want to look sick, but I want it known that the things I have had to endure are unimaginable to someone who hasn’t experienced it first hand, or is the caretaker of someone who has. And since ulcerative colitis is an invisible illness, and it IS invisible illness week, I wanted to share a little bit about what that has done to me emotionally, and consequently, physically.
About Marisa: Marisa recently started writing her blog as her first step forward after 12 years fighting ulcerative colitis and a wide range of other medical complications alone. At the age of 15, after battling to keep her colitis in check, she had her colon removed and a jpouch surgery that ‘went bad,” setting the table for 13 more major surgeries including 3 years with an ostomy bag and 5 traumatic and failed kpouch surgeries over 6 years, in an effort to rid herself of the bag, on top of many painful procedures. All in all, Marisa has spent over 350 nights at MT. Sinai Hospital in NYC. In July 2011, Marisa had, what she is counting on to be, her final surgery, when she accepted the inevitability of living with an ostomy bag. Her experiences have left her challenged on many levels but her determination to “take life back,” coupled with her incredible experiences with doctors, hospitals and nursing staff, make her an expert on how to navigate through medical “trials and tribulations,” and has led her to where she is now – wanting to help others who are going through similar experiences and trauma. Her recent epiphany “that in order to move forward, she will have to accept what has happened to her” has led her to connect with many incredible people who have embraced her and have helped her to come to grips with things. She is incredibly grateful to all of her new friends and has dedicated herself to trying to make life easier for others.
Suicide Prevention/Awareness related to Invisible Illness
Have you ever thought about ending your life?
I just wanted a break. A way out. An end to my never ending pain. I have fantasized about how nice it would be to go to sleep and never wake up. In tougher times I have just wanted to escape because EVERYTHING was TOO MUCH and I could not handle it.
Suicide Prevention Week and Invisible Illness Week happen to fall on the same exact week. This week. And oh how the two of them overlap!
Talking about this isn’t easy. It requires me to be very open and vulnerable to a bunch of people I don’t know (which is easier than…) and to a bunch of people I do know. I don’t want the people who love me to know that those thoughts have crossed my mind not once, not twice, but countless times. I talked about it in this video here. There was a time when I had lost all hope that my pain would end or that I would ever live a normal life again. I had surgery to have my colon removed and was made to believe I would have this new and better life without my large intestine. They told me I wouldn’t feel sick anymore. I wouldn’t feel pain anymore. Instead the year after surgery was spent in even more pain, with even more complications, and I got angry and hopeless to say the absolute least. After surgery I spent six months in the hospital. SIX MONTHS! Day after day after day in pain that never relented, and all I wanted was a break. I would lay there in my hospital bed, whittled down to 82 pounds and so weak I could hardly move, just staring at the clock. Watching it move ever so slowly waiting for the next time I was able to get my pain medication so that maybe, just maybe, I would get a moments relief. Instead of getting better I got worse. I spiked a fever of 106 degrees one day that sent my body into convulsions and the last thing I remember was them putting an ice blanket on me (even though I was SO COLD) and then waking up days later in the ICU. For a few days I was vomiting up larger amounts than I ever thought possible of green bile only to be told I needed surgery again because I had adhesion’s that were strangling my small bowel. I was having accidents that were uncontrolled and came with no warning or sensation which resulted in my skinny body wearing adult diapers that were way too big and noticeable. My hair was falling out, I had tubes coming from most orifices, and I needed help for the simplest of tasks. I was stripped of my dignity, I lost the pretty girl I used to be, and as days went by with no sign of getting better I began to believe that I was destined for a life that I no longer wanted to be a part of.
That was when I wanted out.
I wanted out of pain.
I wanted out of suffering.
I wanted a break.
I would lay there and hope that I would be taken in for a procedure or surgery that would require them to sedate me just so I wouldn’t have to feel. A break…
I would tell my loved ones in the hospital that all I wanted to do was die. I would cry, cry to my mother, that I just wanted to die.
Would I actually take my own life? No. Deep down I know that I am living for something. I know that now, even if I didn’t know it then. I wouldn’t have done it then because I have lost people close to me who had a rough night or a hard life and decided they couldn’t make it a day longer. My first boyfriend shot himself. I have watched other people I love lose people they love to suicide. I think about all the people who love me and who would have to live with the pain I caused them because I needed “a break” or I thought I just couldn’t hold on any longer. I may not take my own life, but who will? As we turn our attention to invisible illness and suicide prevention this week remember that the two go hand-in-hand. I am not the only one living with a chronic illness who has thought about ending his or her life. Living with an illness (especially those that are invisible) is hard. It’s really hard. Reach out. Ask a friend how they are doing. Validate a person’s feelings. Let those you know and love who are suffering know that you care. A simple “good job”, “way to go”, or “you’re really strong” may go a long way.
“Be kind. For everyone you meet is fighting a hard battle.” – Plato
About Sara: Sara writes the blog Inflamed & Untamed and lives with Crohn’s disease, autoimmune arthritis, and a j-pouch. She has become well known in the community of Inflammatory Bowel Disease for her honest videos on YouTube and her work in the IBD community online and out in the real world. Spending years living with her disease in isolation and feeling embarrassed and ashamed of herself and her symptoms, she now has a case of verbal diarrhea and can’t stop talking about the good, the bad, the ugly, and sometimes funny related to living life with Crohn’s disease and a j-pouch. She wants to be the voice she needed so badly when she was alone, and hopes to educate, inspire, and provide support to those who need it.