An Invisible Illness is Still an Illness

By Kevin Grimm | May. 22, 2017

 

When I was eleven years old, I walked through a plate glass window. There was a lot of blood, and I was rushed to the nearest hospital, panic-stricken, with a wound on my leg and another on my face. My mother was concerned that the rather superficial wound on my face would leave me disfigured for life. Because this was my first serious accident, she decided we should wait in the ER for what seemed like hours for a specialist who spent about fifteen minutes sewing up my face and about thirteen seconds on my leg.

About two weeks later, while walking with my mother, I experienced the worst physical pain ever shoot through my leg. My grandmother’s husband joked, suggesting that the doctor left a piece of glass in my leg. My mother figured it was just a cramp and told me to “walk it off.” However, just shifting my weight caused unbearable pain. My mother caught a glimpse of the pain on my face and rushed me back to the doctor’s office that day.

And yup, there was a three-inch piece of glass that actually showed up on the X-ray in my leg.

I learned two valuable lessons that day. One: Sometimes the most well-intentioned people can offer the worst advice. Two: Something can be seriously wrong inside of you that only you can feel.

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I have a mental disorder with a long, fancy name: Schizoaffective Disorder Bipolar Type 1. And it’s something only I can feel inside of me. On a good day, I wake up refreshed from a good night’s sleep, eat breakfast and plan for a productive day ahead while listening to some tunes on the radio. “Productive” for me means getting some exercise, talking to my spiritual advisor, going to a support group meeting and taking my medication exactly as prescribed by my doctor. On a really productive day, I may spend hours reading and writing—two hobbies that bring me a lot of joy and give me a sense of accomplishment.

Being on permanent disability, I have the blessing and the curse of not having to work for a living. It’s a blessing as I get to choose to spend my days doing what seems meaningful to me and it’s a curse in that some of my days are very, very long and tedious. I make it a point not to let too many people see me on my bad days.

For me, living day-to-day with mental illness is like walking on eggshells—you never know which one is going to break. Friends that I have only known for a few years are sometimes surprised at how fast my mental state can spiral out of control. Something as simple as drinking too much coffee and not sleeping for a day or two can cause me to lose all touch with reality and before you know it, I’m walking around thinking I’m Jesus Christ. This actually happened to me back in August of 2015, and I ended up having to check myself into a mental hospital to adjust my meds and get some much-needed rest. Alcohol, though, has a much worse effect on me; I can quickly go from drunk to depressed and suicidal in a matter of days.

The good news for anyone with a mental health condition is that there are ways to overcome just about every kind of illness. Sometimes, medication is needed to restore the right chemical balance to your brain. Sometimes a combination of therapy, behavior changes and medication are needed. Only you and your treatment team can decide what’s best for you. For many of us, myself included, sound mental health is something I strive for every day.

If the dream of sound mental health sounds impossible to you, you are not alone. A lot of people think that. But it is possible and a good place to start is by taking a NAMI class. I am a recent of graduate of NAMI Peer-to-Peer. In the class, I not only learned to lean on my peers from support, but I also learned how to add new tools to my recovery tool belt. 

By far my favorite tool is the mindfulness technique we learned in class. In a nutshell, you learn to train your mind away from your problems by focusing on an immediate object in your environment. The object can be something you carry around with you, or it can be something already found in the environment. I keep a small smooth stone in my pocket at all times for this practice. It reminds me both of my recovery and of my firm resolve to get better.

Another powerful tool in recovery is learning to share one's story with others. From start to finish, we told our stories in class. I was surprised to learn how much I had in common with my peers. By the time class came to an end, I had come to learn a little something about each new friend.

An illness like mine is invisible. The only people who can see it are the people I chose to let inside. It felt wonderful to meet other who shared my same struggle. No longer was I walking on eggshells. For the first time in many years, I could look the world in the eye.

And it all began to by taking a class—it really was that simple.

The last twenty years of my life has been spent in large part learning to recover from mental illness. It has been a long, slow process filled with many hills and valleys. My dreams for the future are to become an NAMI In Our Own Voice presenter and a professional writer. Many people have helped me along the way—doctors, therapists, friends and family—and I would like to return the favor. With NAMI’s help, I feel I am well on my way.

 

Kevin M. Grimm is a lifelong resident of Los Angeles and currently resides in his own apartment in North Hollywood. In the past, he has studied both English and Education and was an elementary school teacher before becoming ill. Currently, he is a proud member of NAMI and enjoys hiking, dining out, and spending time with friends and family.

Comments
Kevin Grimm
Let us all work for peace in these difficult times.
7/6/2017 11:50:15 PM

Alexandra
To Virginia ...from your post on June 18th...
How touching that you responded to my comments here on the difficult feelings of grief over the suicide of a dear friend.
I'm inspired that doing good things to memorialize yours sons friend is a way to lift up his memory in a positive way. The loss of someone especially to suicide leaves endless pain from grief and endless unanswered questions ... mostly what could I have done that I failed to do.
Kevin's blog about the unseen illness taps into the answers though ... I think not only is the illness of schizoaffective disorder bipolar type 1 an unseen illness the answers to all of the mystery surrounding the loss of of my friend will remain unseen as well... unfortunately.....
For Kevin ... beautiful that your journey is inspiring this conversation for one and wonderful that you have made your life a powerful tool to shine your light where darkness would otherwise remain.
Virginia for your son... I'm so touched that you are loving him and concerned enough to make a lovely gesture in memory of his dear friend. It Validates your son, his hurt and loss, and his beloved friend.
And for my friend... I've been donating Bibles, puzzles and crossword books to the county hospital where he stayed for a short time during the last month of his life ... he always wanted me to bring those things so he could share them with the other patients... so now I do that every few weeks... I sign his name inside each Bible and write things like "You are a blessing " so that each person that picks up any given Bible donated in his name will be reminded that they matter. This is one thing that brings me solace ... unfortunately the endless well of hurt and tears won't stop but maybe they are there for a reason.
Virginia .. You are a blessing to me today ! Thank you sincerely.(((hugs)))
Alexandra
6/21/2017 5:50:41 PM

Virginia
For Alexandra (Jun.1, 2017); on the loss of her good friend:

It is a difficult thing reliving old wounds that don't seem to bring relief; remembering a special person - family member or friend. My son went through a similar loss of a very good friend who no longer wanted to live.

Earlier this year, my son reminded me how he missed his friend in an anniversary of his friend's untimely death. When I mentioned to my son I donated a memorial gift to NAMI in memory of the friend, it made him happy again; remembering the memories of the times they shared together. NAMI helps us in so many ways.
6/18/2017 3:08:51 PM

Steven
My true understanding of this illness came to light when my daughter was diagnosed,we did the 12 week family to family that was offered to us through nami can't say enough of how that helped,thanks for sharing,you are truly a ray of inspiration and hope to all.
6/3/2017 7:31:07 PM

Kevin Grimm
Dear Yvonne, each local chapter of NAMI offers different things. You might want to check with your local website. I'm sure the have a website or phone number.
6/2/2017 9:55:21 AM

Kevin Grimm
Dere Elen, again I am not a doctor. My personal experience is you have to be very careful with any drug including coffee. If i personally was going to try marijuana i would start with the smallest dose that had an effect and work up from there. Marijuana will soon be sold in stores in California. I plan on trying it starting with edibbles and being very careful. The last thing I want to do is encourage someone to take yet another drug. They can lead to all kind of problems including psychosis.
6/2/2017 5:45:51 AM

Jossie Elizabeth Vega Cornier
I'm squizoaffective bipolar and I have a baby. I'm a mess but my baby is my reality.
6/2/2017 12:16:44 AM

Virginia Franco
I am happy to state my son James is doing so much better; for years, his life, and mine were in a very tough place. James was diagnosed with schizophrenia at age 15; thanks to NAMI for being there for us. I still worry when he wants to take on huge projects; like, saying he is ready to begin taking several college classes all at once.

My husband and I had dinner at James apartment not long ago. He seemed to have tapered off trying to become a super student. What a relief that was to us. It is so nice to have these moments with him when we can see for him, a better future; but we must step back, be patient and keep on supporting him in every way we can.
6/1/2017 11:35:19 PM

Alexandra
This is a brave post...thank you for sharing it. Im appreciation of your honesty. Im curious too about the effects of marijuana to someone with schizoaffect do bipolar 1 .... I had a dear friend with that diagnosis that died in March of this year. He was in psychosis and he very tragically ended his life. I wonder everyday what brought him to make that final decision. I think he was not on meds and needed them badly. Heartbroken....
6/1/2017 10:19:21 PM

Sue
Thank you so much for your story. My son is 21 with this disorder and refusing to take meds. Every day is a struggle for him and us. I wish he would accept his condition...
6/1/2017 8:16:41 PM

Janet B
Thank you for sharing your story. I pray my beautiful daughter will get to this point. Good luck!
6/1/2017 11:32:34 AM

Tom Roberts
Thank you for sharing! Our stories are similar and I, too, am a NAMI "In Our Voice" presenter in Orange County, CA. I've found that telling others there is hope with this devastating illness.
6/1/2017 9:19:45 AM

Ellen
Kevin,
Your story is very enlightening. My 29 year old son has your same diagnosis. He recently started a part time job after years of not working. He was doing well for a month and then suddenly went back to smoking marijuana, sleeping all day and staying up alone all night. I am so afraid he will have another psychotic episode because of this. He has blown off work for the last 3 days and his personality has changed, so that he is not talking much or smiling at all. Any thoughts out there on the effects of marijuana on the meds he takes for his illness? We are blaming that but I see the sleep pattern thing is a common bipolar trait.. I appreciate any insight we can get on this. He is currently enrolled in the first Nami peer to peer course offered in our area and goes to these classes without fighting us on it, so I know he enjoys them
6/1/2017 9:18:48 AM

Mike B.
Great Share! I love the childhood injury analogy, I couldn't illustrate it any better. Also, Lesson #2: "Something can be seriously wrong inside of you that only you can feel." Back in the Spring/Summer of 2008, I experienced that "self discovery" - it seems like just yesterday. It has been a long and winding road since.
6/1/2017 12:20:02 AM

Kevin Michael Grimm
Dr. Jennifer, I have done a lot of research in this area and advice, although I hate to give advice I'd say talk to your doctor. I believe the prevalance rate is about 1 out of 1000. I believe Schizophrenia is about one out of a hundred. I belive bipolar is about one out of a hundred. Alcoholic or drug addict is about 1 out of 10.
5/31/2017 11:46:41 PM

Yvonne
What a wonderful testament of your experience with dealing with your mental illness. I'm the parent of a schiaffective adult child. Who spends much of his time reading and searching how to better himself. Would you please direct me to how I can get my son signed up for peeer group counseling sessions
5/31/2017 9:52:18 PM

Christine
Thank you for sharing your story. Very inspiring and honest.
5/31/2017 9:28:05 PM

Getty
My brother got the same exact diagnosis twelve years ago, he is still struggling with it and refuse to accept it, but takes his medication nonetheless. I have been in this journey with him since day one and refuse to give up on him. He manages to work on and off, I have tried everything to help him to accept his condition,and to get involve with Nami, but he refuses to do so. I hope some day he will come to terms with his diagnosis and seek help on his own. Thank you so much for sharing, know that you are a very special individual and that your story will do good to many people suffering with mental illness. Thank you so much!!
5/31/2017 7:59:04 PM

Donna
Thanks for your story. I really needed to hear that today. I am going to check in to Peer to Peer in my local NAMI. Good luck to you with your writing. I, also, enjoy writing very much.
5/31/2017 7:47:29 PM

Kristan Airey
Thank you for sharing this. I struggle with Schizophrenia also and it sometimes shuts down my day or week. I have a live in relative who helps me with my children and makes sure I'm not going to do anything to interrupt their regular routine. I also hope one day i can be as bold as you and share my struggles.
5/31/2017 7:14:28 PM

wilma ingram
Thank you. I have a mental illness, not caused from drinking nor using drug's. But from infant year's of mental and emotional trauma's from family, which in turn led me to an abusive situation. I was blamed for those all of the event's by the State of Oregon and Clatsop County DA, even Victim Service's would not listen to me.
5/31/2017 6:08:05 PM

Kevin Michael Grimm
Dear Janet, I have had many dignosis over the years including depression, scizophrenia, scizoaffective and alcoholic. Scizoaffective is the one that rings true. My current doctor and therapist agree.
5/30/2017 10:41:17 PM

Denise
I found your comment, "Being on permanent disability, I have the blessing and the curse of not having to work for a living. It’s a blessing as I get to choose to spend my days doing what seems meaningful to me and it’s a curse in that some of my days are very, very long and tedious," interesting. I would pay money to be able to work. I find myself at a loss of dignity because I am not able to think like I used to, and therefore work. I used to be a lawyer, but cognitive issues got in the way to the point I became incompetent. Yeah, perhaps I could get a job at a store or fast food place, but even that indimidates me. I am not on disability, I just stopped working. I find it hard to get out of bed most days.

It is great you have some goals in mind. But, it might serve you well to aspire to work doing what you like. It may not happen, but if you don't dream big, you might not go as far as you could. There are places where you can work with a disability, a place that can accommodate your needs. Talented writers can be used in such businesses. You can make just up to the level where you won't lose your disability. Just throwing that out there. I used to volunteer at such a place.
5/26/2017 12:53:03 PM

Christa Biber
NAMI is an awesome organization. They shine light unto something that can not be seen. Mental ill ness. Very intelligent, informative articles with rock solid advice.
5/25/2017 10:08:04 AM

Candice
What a beautiful story. It's sad so many people don't understand or don't want to understand mental illness.
5/23/2017 10:47:30 AM

Alex
Hi Kevin,

Thank you so much for sharing your story. Someone very close to me has the same illness. It is great to hear he is not alone and that there is hope. I pray he seeks help like you did. Thank you again for your story and for your bravery!!
5/23/2017 7:17:45 AM

Esmeralda
I'm glad i came across this page today. You couldn't have told your story any better. I came upon this website out of chance. But I am now really interested to see what this program is about and you've also lent me some hope.
5/23/2017 3:52:16 AM

laura kline
Thank you for sharing your story!
5/23/2017 1:54:06 AM

Winnie Wiggins
Your article is wonderful. Thanks for sharing info about NAMI's classes. I will check them out. I too find great support learning from peers in a group setting
5/22/2017 9:48:52 PM

Lizanne Corbit
This is a powerful read, beginning with a strong visual anecdote that makes understanding (an otherwise rather elusive) topic very clear to understand. I love the lessons that you share after that first traumatic experience. So often we listen to those we love, because we know they mean well and we don't think to question their suggestions but when it comes to our bodies, and our health we have to make our own decisions. Again, when it comes to our bodies and health we are the only ones that can truly feel, and experience exactly what is happening at all times. Remembering this, and realizing that even if others can't see or understand it, if you feel something is going on, trust your gut and look into it. I hope you continue finding great joy in reading, and writing -- you most certainly have a knack for the latter. Thank you for sharing.
5/22/2017 8:43:01 PM

Martez Jones
Love you man! Thank you for sharing your story. I struggle with Bipolar NOS. And trust me... it's more than a "struggle" it's a fight between life and death.
5/22/2017 5:43:45 PM

Janet
How did you get your diagnoses
5/22/2017 3:55:01 PM

Jennifer Marty
I also have this condition. From what I heard its not common? But it feels good to read this and see I'm not alone.
5/22/2017 2:15:48 PM

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