Stepping Out of Stigma’s Shadow

By Kelley Hamann, ALMI ACS AIAA and Mental Health Advocate

My familiarity with mental health has been gleaned from the shared experiences of a loved-one’s day-to-day challenges with mental illness, as well as with the associated stigma, which, in my opinion, stems from a lack of public understanding and compassion. As a member of NAMI (National Alliance on Mental Illness), I work to minimize stigma, bringing awareness to mental health issues through advocacy—by being open, honest and sharing our experiences so that others can begin to understand.

Sharing Our Story

November 2016

A Parent’s 1st Reaction

It was August 15, 2014, yet we can still clearly remember the events leading up to getting the diagnosis, as well as our first reaction upon hearing that our daughter was battling Bipolar, OCD, Generalized Anxiety with Panic, PTSD and SPD. The perfectly natural response (I believe) for my husband and I, was to grieve. Even with the bizarre, out of character behavior the weeks leading up to this day, it was the elements of not knowing much of what to expect for future outcomes that led to the grief for what we imagined would be the profound changes that’d take place (picturing in our minds worst-case scenario), robbing her of lifelong hopes/dreams and for the loss of the parents we thought we’d no longer get to be.

Then, through education and support, we “wised-up” and began re-envisioning the parents we’d need to become to support her.

…seems so silly when I look back on those feelings now; but those feelings were so big and so real—I remember that if I spent too much time thinking about it, it began to feel like I couldn’t breathe.

She was just so sick at first that my husband and I couldn’t imagine a time/place when she’d be back to any semblance of her old self. She was unsafe to leave alone, required constant care and looking after for personal safety that we thought she’d basically be living with us forever.

She wasn’t tending to her personal hygiene without reminders; even then it was hit or miss if she’d brush her hair and teeth; getting her to shower or change into clean clothes and use deodorant was a battle. She also couldn’t seem to remember to feed herself, and if she did, putting together something healthy was no longer within her realm of capabilities.

It Got Worse Before it Got Better

We had no idea at the time that it’d get much worse before it’d get better (MUCH better)!

Until her medications stabilized her, there were continued days of her hyper focusing and her mind racing. And talking to her was like having nine separate conversations at the same time. Some of the thoughts flowed, yet some thoughts were never finished. The nights were worse; she’d spend hours sobbing uncontrollably…then she’d stop crying, say something I couldn’t understand and laugh, then revert back to sobbing. These were the times we were terrified to leave her alone.

Though admittedly, while sleep deprived, I found no humor in it at the time, I once got up in the middle of the night to investigate a noise to find her (still in a manic state), having decided to empty all the kitchen drawers and cupboards. Baffled at this behavior, I asked what she was doing as I noticed she was putting everything away in totally different places. She said she never knew where anything was. I replied that everything is where it’s been for the past decade so how does putting everything in a different place help?!

Then, as is typical with a bipolar illness, a month later, the pendulum swung in the opposite direction. After struggling through a manic state, she had only a few weeks of somewhat “normalcy” before the pendulum began swinging too far in the other direction…quickly spiraling into depression. 

She only made it to the first six days of school before I pulled her out---for her safety and the safety of others. She said she was feeling angry and violent (not who she was before all of this, and not who she is when stabilized on her meds). She said she was afraid of what she would do to others if they so much as looked at her wrong. She was afraid of hurting other students (lately she’d been lashing out more in anger…screaming/crying and throwing things).

If your loved one does this, it is important to remind yourself he or she suffers from a mental illness, and it is the disease lashing out, not your loved one.

Accepting the reality that we could no longer do this alone, we reached out to a hospital that specializes in adolescent Mental Health programs, Rogers Memorial. (Check them out, they have wonderful adult programming too at multiple locations https://rogershospital.org/locations).

Though they felt inpatient was likely needed, due to limited bed availability, the best fit at that time was their Adolescent Intensive-Outpatient program. After being in the intensive outpatient program a short while, it was apparent she needed more programming and support; she was transitioned into the Partial Hospitalization program.

Though I know this is for the best, as we admit her and walk away, I fight back the tears and try to remain calm and strong for her.

What about school you might wonder? Well, while education is valued, what good is it without health, a state of well-being and the ability to enjoy life (not just endure/survive it)? We believed (and still do) it was more important for her to concentrate solely on the program she was in at the hospital, learning how to cope and function with her disease. 

While this seemed like the right thing to do at the time (and allowed us all to sleep), we later learned from a trained behavior specialist it was not. That was us accommodating her behavior and allowing it to perpetuate.

New Fears Develop

Even while in treatment, new fears and paranoia were developing (medication types and levels were still not quite right). For some unknown and unexplainable reason, she suddenly became terrified of her own bedroom (previously her safe-haven). She refused to spend any time in it and was CONVINCED she’d be attacked if she was in there alone. The only way any of us can sleep is if she sleeps in the living room on the couch…most nights with me beside her to ensure her “safety.” There was just no convincing her she’d not die otherwise. This went on for months.

Similarly, there was a day when she’d asked for a baked potato and when I’d prepared one for her and placed it in front of her, I later came back into the kitchen to find her turned around in her chair. She was afraid to leave her chair so she turned around in it with her back to her baked potato. She didn’t like the way the bumps on the surface made her feel, so she couldn’t look at it.

We’ve learned that, while we can’t see how one thought/experience/fear leads to the other, the fear she feels is real nonetheless and we accept her feelings and love her without mocking the fear (no matter how ridiculous it may seem) and calm her. While in the midst of it, is not a good time to point out she’s being irrational. They are her feelings and her feelings are real. Fear doesn’t have to be rational to be real.

Look For (and ask for) School Support

A few months later, when our daughter was ready to discharge, it was clear to everyone that reintegrating into a typical classroom setting would not be a good fit for her right away. In working with our school counselor, district nurse, school psychologist and principal, a resource was identified: a retired teacher who would come to the school a few hours a day to meet with my daughter 1×1. They met in a small quiet unused room so my daughter could continue with two classes (all she could handle at that time).

Schools will also work with your care team to develop an individual education plan, IEP or 504 plan. If your child needs special supports (short or long term), they can be identified and built into their educational plan. If your child needs an environment free of sounds, distractions or other stimuli—ask. Does anxiety necessitate additional time for testing? Or perhaps online school is a better option for your child. If your child qualifies for an IEP, it falls under the Special Education umbrella and opens up a wide range of supports (in school and in the community)…and allows your child time to focus on recovery, allowing them until age 21 to graduate.

After her intake exam, she was getting redressed and while the nurse turned to face me, I look past her shoulder to see my daughter pick up her shirt, stare at the long sleeves & proceed to wrap it around her neck. I scream “That does NOT go around your neck!”

4 Months later

Just when it seemed recovery was within reach, my daughter came to me one morning as I was getting ready for work and said she was scared to be alone and didn’t feel safe. She said she couldn’t get images out of her head…images of her with a belt around her neck. After we confiscated her belts, it evolved to wanting to use cords, so suicide watch and “suicide proofing” the house began. So did calls to every resource and facility for help (while keeping a close eye on her 24/7). She never did anything at home, but quickly started seeing EVERYTHING as a potential method for strangulation.

February 12, 2015, she went inpatient at Rogers Memorial. She could no longer resist the impulse to act on the intrusive imagery. During the admissions intake she decided to demonstrate, quite unexpectedly, how the long sleeved shirt she was wearing could easily wrap around her neck, which earned her a 24/7 1×1 nurse. To keep her safe, her clothing must be checked in/out at the nurse’s station and she is on room lock-out.

We further suicide-proof the house as much as we can, but know that through recovery treatment, ultimately it is up to her to make the right choices, too.

Her psychiatrist is recommending upon discharge to step down into another level of care, back into the partial-hospitalization program.

Those Images…Who Knew…Are a Compulsion!

While an inpatient, our daughter was put through an anxiety/OCD consult due to her strangulation imagery and behavior. We’re told her anxiety/OCD is quite marked and simultaneously fight against, AND feed into, het Bipolar illness. She’s inundated with images of her tightening a belt—or other objects—around her neck. They can be fueled by suicidal thoughts from bipolar depression; they can also be a compulsion.

She no longer wishes to be dead, but cannot be rid of the images. As a compulsion, she does feel quite literally compelled to act upon those images, which is obviously the bigger (ongoing) concern for us all.

Residential care was initially recommended; yet her overwhelming anxiety is one of many factors making that an impossible consideration. So they put her on the waiting list for a new (and highly successful) OCD program being offered in a few of the Rogers facilities on an outpatient basis. It also includes a great weekly parent education class.

As the hospital social worker is relaying all of this to me, I pause and say, “Wait, I’m confused; all I previously knew about OCD was being neat and clean—washing your hands repeatedly or checking to make sure the coffee pot’s turned off. I’ve never heard about being assaulted by images of death (your own death) making you to want to act upon it. I’ve never heard of imagery being OCD.” I’m assured her strangulation imagery and suicidal ideation don’t necessarily have anything to do with wanting to die. And yes, it’s a somewhat unique form of OCD. In fact, her social worker went on to say in her eight years, that my daughter’s is only the second case she’s ever heard of.

Taking Ownership of Your Mental Health Recovery

Having some of this figured out is a relief to all of us. Knowing she needs to be safe and doesn’t yet know how to deter these images or control the thought patterns around them, she’s encouraged to self-advocate (we’re not always going to be there to do it for her). She gets the opportunity to do this a few nights later when she begins to view her roommate’s pants around her neck. A nurse sat in her room until she fell asleep and stationed at her door for the night, frequently checking.

A few weeks later, she was discharged and admitted into partial hospitalization for a short while, until there was an opening in the intensive outpatient OCD Exposure Therapy program.

We went to great lengths to make the house safe for her return, until her care team advised reintegration (items that trigger her imagery/thought patterns). All cords, belts, necklaces, clothing with long sleeves or pant legs, shoe laces and tie strings were removed, down to dog leashes, lamps and small appliances. Behind two locked doors it looks like we’re serious hoarders and the rest of the house is very sparse.

And HUGE step: she went to bed in her own room for the first time in 7months!

Recovery is not linear

Recovery will look different for everyone; but it is most assuredly going to be the same in that it will be full of twists, turns, setbacks, sidesteps and small advances; but stay on that path, looking forward. And every now and again look back, just to appreciate how far you’ve come!

It took almost a year to get the right combination and dosages of our daughter’s different medications—her unique cocktail. And just when we thought we had it right for symptom management, it caused a spike in her cholesterol (side effect of her anti-psychotic). This meant starting the “game” all over again, lowering the dosage of one med, attempting to try a different combo. We quickly determined we couldn’t swap her off the anti-psychotic; when we got too low, the bipolar mania kicked in full force. We went instead for lowest effective dose, monitoring cholesterol (partnering Psychiatrist with Primary Care Doctor).

What Can a Parent Do To Facilitate Recovery?

The first step for me was to change into a completely different mom. Gone was the introverted mom in the background. I had to advocate for our needs, learn about her illnesses so I could help her and educate others, ask friends for help.

1. Become your child’s very best advocate!
Headstrong.   Stubborn.   Pigheaded.   Contrary.  (I prefer PASSIONATE)…
Yup ‘been called all of these things (and more) over the years; but ya know what—no one messes with THIS Mama-bear, as she FIERCELY guards her cub! And to me that’s what it means to be an advocate for your child. If you, as a parent, aren’t acting as the best advocate for your child, who will?

Example:

Ever have a bad experience with a psychiatrist? Been made to feel like you were on a conveyer belt rushing through her office? We did, and in asking around, others did too. We didn’t accept that and fired her, and found another. And we love the new doctor, who spent 1 1/2 hours getting to know us at her first appointment — much different than the cursory 15 minutes her previous doctor spent.

2. If your child’s received a (mental health, or ANY) diagnosis—it is your duty to learn ALL YOU CAN, so when treatment options are discussed, you can know if this is/isn’t the best course of action for the best outcome for your child’s INDIVIDUAL needs.
And if you have questions—ASK! If you have concerns—SPEAK THEM!
Never let a practitioner play the role of ‘playground bully’, intimidating you into silence. If your practitioner resists your questions, there are plenty of others out there.
Learn the warning signs for your child’s illness and the specific triggers.

A few examples:

Cord Trigger: One morning I’d used a flat iron and left it out to cool before storing. I’m ready first, and make a trip to the car. As I’m tidying the backseat, she comes flying out of the house looking like a startled rabbit (not actually ready to go). “You left me alone! With a cord!” she shouts “You left me alone with a cord out…by myself in the house!” PANIC ATTACK!

Mall Music: We just recently noticed the pattern and realized certain fast-beat rock music triggers mania. When she encounters this music, it makes her chest feel like it’s going to explode, she becomes super chatty and flits from store to store wanting everything (no impulse control). She quickly becomes a different version of herself.

3. Build a network of support and maintain it with intention!

You’ll need them, rely upon them—heavily, in times of trial and crisis, asking for favors, perhaps meals (who knows?). So it’s vital to maintain those key relationships in times of calm and recovery.

I know it’s hard to think about this when everything is going well for you and/or your loved one, hard to put yourself “there,” to force yourself to think about the times of trial, when you’re basking in the glow of recovery. And though this may be difficult, it is perhaps one of the most important things you and/or a caregiver or family member can do for themselves.

After all, if you don’t intentionally maintain, and build upon, your support network now, how can you guarantee it will be there for you when you will need it most? And with your intentions, please be genuine. Cultivate these relationships and treasure them; they will be your beacon of hope.
It is not selfish to steal away some time for yourself and go have coffee with a co-worker, a friend. Especially if you are a caregiver; you are not betraying your family member (who is in a very good place in their recovery) by leaving them for an hour or two.

And don’t just think 1 or 2 people are enough…go deep. Build your network like your life depends upon it…because in times of crisis it will feel like it does.
Everyone brings something different to the table—a different skillset if you will, not that you should seek out someone for a particular skill, but if you have developed a big network of support, when you need a helping hand, chances are you will have someone that can help you. For example: several special someones who can drive your child to school if you are suddenly in the hospital (because they are a stay-at-home working-mom and can offer that flexibility, or they are retired, whatever).

You never know when life will throw you a curve ball and this support network becomes your safety net:
…people you can call at all hours just to talk, seek wise counsel
…friends who will rush over to offer hugs and a shoulder to cry on.

Being a parent of someone whose brain functions differently (and succumbs to illness) is not always easy, so be prepared, have your safety net in place and continue to build it out, keeping it strong.

My daughter has fought hard to maintain her mental health recovery. She knows the importance of taking her medications daily and regular therapy check-ins. She also attends weekly support groups for teens offered through our local NAMI affiliate in West Bend.

She is even planning to attend a local college. Where life takes her next on her journey no one knows and that’s okay. Her journey and her timeline are uniquely hers.

As for us as her parents, we couldn’t be more proud of her accomplishments and her fight for recovery. We’ve also learned it’s ok to grieve the loss of what was – change can be hard – just don’t get stuck there in the grief; give yourself enough time and be open to what comes next.

Look for resources, support groups—NAMI, your child’s school, Rogers. Call and ask what they can recommend.

Support Groups & Other Resources:

http://www.nami.org/
http://www.namiwisconsin.org/ State site
http://www.namiwisconsin.org/iris-newsletter/
http://www.nami-positiveimage.org/ West Bend Location
http://www.namigrm.org/ Milwaukee area
https://karlasmithfoundation.org/

Misc:
http://www.crisischat.org/chat/
https://www.spdstar.org/basic/about-spd
http://www.helpguide.org/
https://www.nimh.nih.gov/health/topics/bipolar-disorder/index.shtml
http://bringchange2mind.org/programs/psas/
http://www.dbsalliance.org/site/PageServer?pagename=peer_landing

Back to Profiles of Solutions
Back to peace of mind
Back to top

Last edited by Tyler Schuster.   Page last modified on October 31, 2016

Legal Information |  Designed and built by Emergency Digital. | Hosted by Steadfast Networks