Living with An Invisible Illness
"But She Doesn't Look Sick"
There are countless people in this world living with "invisable" medical disorders. I just so happen to be one of the unlucky few with several of them. In this lense I will share with you a blog entry on what it is like living with an Invisable medical disorder and what you, as the friends and family, of those who might also be living with such a horrible condition can help. Too many people are being lost each and everyday to suicide. For a moment open up your heart and realize though we might not have an "accepted" disease such as cancer our conditions are real and the amount of pain we experience daily is unimaginable. We need your love and support, through our good days and our bad. Please don't judge us, we did not ask to be inflicted with this life. We would give anything to be healthy and living the life we watch others live while we simply watch from the window looking out. Please don't give up on us - we are trying each and everyday not to give up the fight we battle each day of our lives.
Do You Live With An Invisable Illness?
The Stigma Of Mental Illness
"They're all alike."
It was a rude awakening listening to the receptionist at my doctor's office.
I've previously been stereotyped within earshot for various reasons over the years, but not usually when I'm the paying customer. Most employees understand who ultimately pays their mortgage and it's not so much their employer.
Another customer - aka patient - and I were sitting in the waiting room that day. The other customer sat down moments before, following the check-in process, during which she was laughing and chatting with the same receptionist in question.
This apparently newish receptionist then answered the phone. She hung up and turned to her coworker to ask a question: "What's the process in this situation?"
The more experienced receptionist asked a clarifying question around the circumstances.
Unexpectedly, the newer receptionist launched into a mocking tone while mimicking the patient's story.
The two receptionists ping ponged their talk regarding the appropriate process to follow. The more experienced receptionist ignored the mockery and stuck to business. Shockingly, though, she did nothing to stop the newer receptionist's impersonation or educate her about her attitude.
The other patient and I looked at each other. Eyebrows rose. The other patient decided to speak up, with a teasing tone in her voice. "Hey, we can hear you, ya know. Sounds like you had a tough call?"
"NO!" came the answer from the mocking receptionist. "All calls from patients are like that. I ask a question about their medication and they answer with a huge long story about their pharmacy and what's going on there. Like I care."
"Maybe they think they're helping you understand the situation," interjected the patient.
"No, they're just whiners. I can't believe how patients go on and on, without saying anything important. All day long, every day. It's so annoying."
The other patient and I realized she wasn't interested in hearing another perspective, and her coworker wasn't interested in training her on the finer points of customer service.
Attention spans for self-care shorten as our recoveries drag on from illness or surgery. Our society doesn't do patienthood well anymore. We want popcorn-ready recovery. Click a button, and presto - we're done. We live in an Instant Everything world. "Three seconds for a Web site to load??? Sheesh!" We live in an Instant Gratification, Instant Everything world. We don't always know how good we have it until we don't.
Patients like me must be wearing for professionals. All the work they do to make sure we have the best chance to lead as best of a life possible, yet we continue to risk it because we're impatient. I've heard of doctors firing patients for not conforming to orders or in my situation, simply because they have the diagnoses of borderline personality disorder. I'm grateful for the few friends I do have and the few health care givers who have stuck with me through my own occasional self-sabotaging efforts.
The Stickability of Stick Together: Who sticks by you when your actions suggest that their efforts might be better spent elsewhere?"
BPD has stolen everything from me. My health for one. I, like so many others with invisible disabilities, have a hard time getting people to take my symptoms seriously. Like many, to look at me on a normal day, you would never know I am ill.
The depression, otherwise known as dysphoria, causes me such debilitating symptoms at times that include loss of energy, pain, vertigo, memory loss and even more brain damage as the disorder spreads over time. Sadly, people don't understand when I feel this low, going out and socializing is next to impossible. Because of the constant dysphoria, I often miss out on family gatherings, special events and even simple visits with friends and family, causing myself to feel even more isolated and alone then I already did.
I have found close relationships difficult to make and maintain. I have trouble doing anything that requires any sort of focus so I haven't been able to develop many of the skills and talents I would have hoped to by this age. Worst of all it has destroyed my sense of self. My identity. I honestly dont know who I am without this illness because i've never met that person. If this disease has given me anything it has been a deep appreciation for the small things I do have in life. It has forced me to prioritize and determine exactly what is important to me. It has given me a lot of time to think.
While I wouldn't wish borderline personality disorder on anyone, I have to admit that I've learned so much from my experiences associated with BPD that I can't imagine who I'd have become without it.
Has it sharpened my empathy for other people's struggles? Check.
Has it caused me to slow down and reflect when I might not have otherwise? Check.
Has it required that I either draw inward in despair or look outward in gratitude? Check.
I am only left to believe this disease was given to me to help bring awareness, fight this every day war of trying to live, and see if I can succeed.
This disordered has allowed me the privilege to have met some tremendously talented, encouraging, and giving support groups and fellow BPD sufferers. They inspire me. YOU inspire me. You keep me going in ways beyond physical health. You are among the many untold sick people in my life. You help me keep going and stick to it.
Not all impairments are readily evident to the onlooker. Because of this, we refer to conditions which cause debilitating symptoms that are not so apparent from the outside, as "invisible disabilities."
There are millions of people who are forced to contend with serious illnesses, injuries and circumstances, which have left them with mountains to climb every time they take a step. Most people do not realize a person can have hindrances on the inside, that may not visible on the outside. Their restrictions may not be conspicuous at a glance, but their pain, limitations and inability to function normally can be debilitating.
Think of a severe flu condition. All of your energy is sapped, and every muscle aches you would just as soon jump off a bridge then get out of bed. Of course, most flu symptoms subside and disappear in a matter of days.
What may seem easy to you, may seem like a 14,000 foot hurdle to us. I've collapsed in stores, become very dizzy and weak or even blacked-out and had seizures.
It takes time to appreciate the value of climbing a mountain. You do not know if you will be able to make it to the top, get stuck half way, or be so frightened you stand at the bottom, afraid to take the first step. Choices in real life are the same. Some things we can do very easily; others we begin, but midstream we freeze and have no idea what our next move should be.
The hardest thing is when I have faced mountains that seem insurmountable. I have been trapped at the bottom several times, afraid of what to do next. Pushing myself forward has taken minutes, days, weeks, even months. Recently, I faced a big mountain. As many of you know, my fiance went into a rehab facility due to a violation of probation, going in clean but coming out a drug addict. Within a week I was forced to make him move out and within a month he was a full flegded junkie - shooting heroin several times daily. In that timeframe I also became aware he had stolen thousands of dollars from me and cheated on my while in rehab. The loss of him; however, left my heart shattered and empty.
Other even more difficult mountains I've faced in my life are those that deal with my health. The reason is because many of these challenges have been things that I have had little to no control over.
If you turn on TV or open most popular magazines, you are confronted with healthy and beautiful bodies of models under the age of thirty. That is what life is supposed to be about, or so we are told. We are all supposed to enjoy our bodies, exercise aerobically, be sexy, and drive glamorous new cars, and remain under the age of thirty without showing any effects of age, gravity or disease. Or at least that is the "hype."
How does someone with an invisible disability fit into that idealized picture of the good life? She doesn't. Therefore, I suspect that my so-called friends were confronted with a choice: either remain loyal to me or remain loyal to the false picture we find on TV and in the mass media. Many people choose to embrace the American ideal of a sexy-healthy-body-under-the-age-of-thirty, and therefore ditch me. At least that is what I suspect motivated my so-called friends to hold me in contempt and abandon me in my hour of need.
We tend to take health, family, food, and other blessings as being our birthright. We should all learn the most important lesson which is to not judge others by their appearances. By looking at people, we cannot possibly know the hurdles they may face daily, whether or not their challenge is obvious to us. The bottom line is that every person on this planet is one-of-a-kind, has purpose and is extraordinarily valuable.
After all, human beings are not all cookie-cutter perfect nor the same. We all have different weaknesses and strengths. Therefore, instead of expecting everyone to fit the same mold, let's look for each person's individual, exceptional qualities and show them our admiration for their courage in the midst of their hurdles.
The Call - Matt Kennon - All We Need Is Your Support
What we all want is just to know we have someone out there, a friend - something so simple yet something so many people will never realize the importance of.
Lend A Helpful Hand, Not A Hurtful Heart.
Imagine feeling weak, in pain or like you have the flu and you struggle just to lift your arms or stand, knowing you need to do every day things like take a shower, make a meal or wash some laundry. Each day you must pick and choose one or two things to accomplish, leaving the other 100 things to accumulate. Going out for an errand or social gathering takes even another juggle. In order to exert the energy to do this, many must prepare for the journey by giving up various other daily duties to keep enough energy available to simply go out.
In order to cope and thrive, we must avoid overdoing and overexertion or our symptoms can worsen. Therefore, it is very important to remember that we know when and what we can and cannot do.
Our symptoms from the inside can be debilitating, even though we appear to be fine on the outside. As a result, as our friends and family we need you learn to listen to us when we tell you we are unable to complete a task or participate in an activity. I understand you will often have difficulty understanding these hurdles, but it is crucial for people in our lives to be understanding, patient and allow those living with an invisible illness to make necessary changes according to our own personal limitations.
You should not feel as if you need to "cheer" us back to the "way they were before." Remember, we did not choose to have this disorder and we fight every day to keep our dreams and desires alive. Nonetheless, faulting us for not being able to do things we used to be able to do, or you feel is such a simple task, could only make us feel as if we are even less valuable human beings.
In fact, the last thing we have wanted is to give up those activities in our lives that are dear to us. Yet, when we push themselves beyond their limitations, we can become much worse. As a consequence, increased stress, exposure to heat and overtaxing oneself can all cause a relapse, exacerbation of symptoms or even further damage.
Learn to be aware of our symptoms, despite how chipper we may appear during our visit with you. After all, we smile because we enjoy seeing you. We are also trying to keep a positive outlook, despite the pain, not necessarily because we feel good and are doing well. Do not push for us to tell you we are "having a good day," if we are not. Some have mostly good days and some bad. Some have mostly bad and some good. You should allow us to be honest with you. We do not require your complete understanding, just your belief in us.
Please respect our limitations. Over-doing oneself only can lead to increase in symptoms. You must allow us to say "no," even if you do not fully understand the reason why. Also, always remember to tell your friend or family member with the illness how much you admire their strength and determination. Many times people living with these illnesses are treated as if we are just being weak or lazy. But, if you examine the evidence, you will find someone who actually has incredible courage, strength and perseverance.
The best way to support a loved one in this situation is to allow them to say, "no" when they feel they need to, even when you do not totally understand why. If we are repeatedly asked to do what we have told you they cannot handle, this will only add to our frustration and feelings of worthlessness. Moreover, we will feel more alone in our challenges, because you do not understand or respect our boundaries.
Finally, people living with these illnesses do not want your pity. We simply need your love and support. You should not worry that addressing our hurdles will discourage us. After all, ignoring what we are facing and trying to downplay it can leave us feeling as if you do not have any idea how what we are going through.
For that reason, you can validate our feelings by listening and acknowledging our concerns. This will give us strength and hope to know you are standing by us. Most of all, when you let us know that you see us as the courageous, strong, determined people that we are, we will fight even harder.
Like many living with invisible disabilities, I want to someday be able to do the things that most people take for granted. I continue to research and try new treatment. Many of us living with these types of conditions struggle daily. As life goes on with us often simply watching from the window, we are forced to miss out on weddings, graduations, parties, family get togethers and holidays. People in general don't realize how much we appreciate the simple things. How you have the ability to wipe the loneliness right out of our heart at any given moment of despair by showing a little love and compassion. It doesn't take much. Just a bit of your time can make a very big difference in our lives.
Don't Judge By Appearances. Lend A Helpful Hand, Not A Hurtful Heart.
Always Remember You Are Not Alone
Throughout much of my life I never felt like I fit in or was "normal." As I got older, and sicker, this feeling out being an outcast just continued to increase. Each person is different; however, for me, music is something I can say without a doubt has got me this far. The lyrics a song can contain can have such a lasting impression on a person and you never know when that next powerful song will be stumbled upon. Below is a song that has been a source of inspiration for me since I first heard it several months ago.
In your deep and dark moments, whatever it may be find someone or something that you find helps you. I promise though you might not think it, hope is out there. Always remember after the rain comes a rainbow.
You Can Help Preventing Another Needless Suicide...
These words that I have written truly come from deep in my heart. I have felt the Stigma, the isolation, the helplessness and desperation first hand. Unfortunately, I was one of the many that didn't have anyone to turn to until it was too late. On February 17, 2010, the same day I was released from a mental hospital for overdosing on pills I was determined to end my pain - forever. I couldn't even begin to try to tell you how many pills I took but I knew that didn't guarantee death so I proceeded to literally cut out the veins in my right wrist down to the bone. Though the blood was just flowing out of my arm I felt nothing but peace. My pain was ending - it was almost over. All I had needed was someone to talk to - someone to listen to me, let me cry my eyes out and just hold me. But in my case I didn't have that. For the three years preceeding my suicide attempts I had spent the entire time in complete seclusion alone - no friends, no family - no one. I look back now and think what if I had had someone? How may of my outcome have been changed? Could my suicide attempts have been prevented?
That's the last thing I remember. My next memory is waking up 6 days later from being in a coma from loss of blood completely outraged that I was alive. How could doing that to my wrist NOT have killed me? What proceeded waking up is an entire story in itself but after almost dying yet again less then a year later when I had a seizure while driving, flipping my SUV four times, having to have the doors cut off to get me out yet not even having one scratch on me my mom has always said I am here for a reason. I want to believe it is to help others who were in my shoes and bring awareness to this huge problem that most people brush off everyday. Mental Illness is real and it is killing wonderful people each and every day.
One of my all time favorite quotes, and I have many is:
"Dare to reach your hand into the darkness, to pull another hand into the light."
I don't tell you this to horrify you but to put a real face and image to mental illness and what it can do to a persons life. It almost took mine and unless we as a whole realize "depression" is not some silly person being sad there will continue to be unneccasary deaths. I know they could be prevented. I know now me almost loosing my life did not have to become my only option. I just needed help and so I ask of you, will you reach out your hand. Will you show another the light?
You could never imagine how much a smile, a nice compliment or the simple act of caring could make the difference in saving another person's life. I was given another chance but many aren't as lucky. As a reminder of what I went through, all the pain, the suffering and the hopelessness yet the reminder I AM still here, I had the tattoo shown above inscripted over the very large scars on my wrist to always remind myself - Tomorrow is "A New Day." To remind myself to NEVER give up because who knows, you just never know what tomorrow may bring.