When Stigma Prevented Me from Getting Help

[David Baxter PhD]

When Stigma Prevented Me from Getting Help
By Jenny Marie, NAMI
Oct. 22, 2018

I was a young girl when I started to experience confusing and frightening symptoms. I didn’t tell anyone. I knew my problem wasn’t normal and didn't think anyone would ever understand. I didn't dare speak up, in fear of being ridiculed. I thought I could handle it on my own.

It took me twenty years to divulge my secret. I finally went to my doctor and was diagnosed with panic disorder and agoraphobia.

I'm not alone in waiting so long to get medical help. For many, it takes years to tell someone after the first warning signs appear.

The main reason? Stigma.

I was able to hide my panic symptoms. I suffered silently and tried to move on with my life. I graduated from college, got married and had two baby girls. But by my early 30s, my panic attacks became more frequent and more severe.

I was angry with myself because I couldn’t stop the anxiety. My internal monologue wasn't very kind:

This is stupid. I worry too much. No one else feels this way.

What's wrong with me?

Maybe it shouldn’t bother me when my heart beats too fast, and I get lightheaded and dizzy. It’s just how I am. So what if I feel sweaty and shaky, and start to black out? I need to be tougher when I think I'm going to faint. I have to calm down when I feel like running out of the place where I'm panicking.

Who does that? Get over it.

It's the dumbest thing ever that I don’t want to drive because I'm scared of feeling panicky. People get annoyed when they're stuck in traffic, but their hearts don't pound and they don't need to pull over to get hold of themselves.

People would think I’m “crazy” if I told them about feeling disoriented—that sometimes I feel like my body is numb, and I’m awake in a foggy dream. That I get scared from looking at myself in a mirror wondering if the person staring back is really me. Who could possibly know what I’m talking about? I’m so weird.

No matter what I do, I can't let anyone know. They'll think I'm strange. I doubt a doctor would know how to help. Maybe I have a brain tumor. I don't want to scare my family.

Whatever. I'm fine... Usually.

When I look back on how I used to talk to myself, it makes me sad. I was sick and needed help.

Growing up, I'd never heard anyone talk about mental illness. Maybe if I’d had, I would’ve received treatment much earlier.

But I thought I was alone.

It shocked me to learn that I wasn’t.

It took me twenty years to finally talk to my doctor about my symptoms. When my doctor told me I had panic attacks, panic disorder and agoraphobia, I felt a huge sense of relief. Not that I wanted to have those conditions — but I felt validated. I couldn’t believe that those scary sensations I’d had all those years, actually had a name.

I was surprised there was medication that might help me. I was even more amazed when the antidepressant worked.

My daughter Talee was 10 years old when she started to show signs of panic attacks. It broke my heart to know that she had to deal with the same terrifying symptoms that I'd had.

Even though I'd been through it myself and knew that millions of others had anxiety, I still felt the stigma. We both did. Talee did not want her friends to know. She didn’t want them to think she was strange or different. I didn't want Talee's teacher or the other parents to know. I didn’t want my daughter labeled.

But I was not going to let my sweet girl suffer in silence and secrecy, as I'd had. I pushed the stigma aside with all my might and got her medical help.

Back then, I didn’t think it was possible for the stigma to lessen. I didn’t think people would ever speak openly about their mental health issues. But they are. I’m grateful that mental illness is finally being acknowledged as a real medical condition that cannot be ignored.

The more that people talk about it, the less taboo it will be for future generations. We’re heading in the right direction, as many schools now offer courses in mental health. In-school awareness programs, such as NAMI’s Ending the Silence, teach high school students the warning signs of mental illness, and what to do if they notice those symptoms in themselves or a friend.

We must keep the conversation going. People need to know there’s help available and there is hope.

There’s no shame in having a mental health condition.

The shame is in the stigma.

Jenny Marie is a mental health advocate and blogger. Jenny is married and has two daughters. Her blog is called Peace from Panic.

 

[Jesse910]

I am glad that the author of this article was able to get assistance for not only herself, but also for her daughter. I understand about schools and their records. My husband and I made the decision to protect our son from possible shame / stigma when he was in school.

In terms of talking about our issues and what we be facing, I sincerely believe that everyone has to make a decision on their own. And, I believe that one of the questions to raise is how will revealing my mental illness affect my job, relationships with co-workers, family, and friends? I lost jobs because people did not understand and I bore that intense stigma for years until I began to heal with therapy and meds.

 

[GaryQ]

I am in one of those weird predicaments because of my physical and mental issues that's both depressing and at the same time a blessing.

The depressing part is the male ego takes a big hit and has difficulty accepting the reality that I'll never be able to go back to holding a full or even part time job and having to accept being on long term disability till I'm 65 if I live that long.

The blessing is I don't have to hide or pretend that I have these issues because they are the reason I get money every month to live. Not having to pretend that I have my **** together means I can actually seek and accept help without giving a hoot what anyone thinks about me or my problems. Stigma, shmigma goodbye.

I feel sad though for those that have to deal with it in a society that pretends like mental heath awareness and protection is real when in reality it's mostly make believe just to not been seen as insensitive and heartless. I do hope one day people with mental disabilities and invisible physical disabilities (like someone that looks healthy as a horse but has severe cardiac or other invisible illnesses) will be treated with the same respect it took those with visible physical disabilities forever to finally get. Although even they aren't always treated as nicely as society tries to make us believe they are.

 

[forgetmenot]

Hard one to reveal or not i mean even the health professionals judge stigmatize.
I chose to just fade away from everything everyone. i did not even apply for disability too hard even when i was off work for awhile the stress they put you under to get back to work to be who you were the paper work the computer filing stuff all too hard.

I got my daughter help at a very young age and although she got the extra help she needed she was stigmatized she was judged separated from the class at times. Hard call what one should do like said maybe one day all people will be treated with respect treated like anyone else with compassion.

 

[GaryQ]

I've heard many sad stories that reflect what you express regarding disability insurance and companies.

I don't know if I'm just one of the few lucky ones but from day one even on short term disability my case worker at my group insurance company was caring compassionate and understood that I would rather be working and that it affected me deeply. I felt, and still feel useless and a burden to society because of it.

Except for the necessary forms for me and my doc to fill out every year or two they have never pressured me in any way whatsoever and I've been on it since December 2010.

I have suffered a lot from the paranoid anxiety of "when will they cut me off fir some reason or another or say I'm able to work", "Did they mail me something and I didn't get it and be cut off because of it?" For the first I'd say at least 5 years I'd stress out worrying if my next disability payment would come in and that was from the day after I got my current one till the next one came in. Now, it's the anxiety that it's been 2 years since my last medical form request and I haven't received anything in the mail about it yet. Not to mention Canada Post workers going on rotating strikes.

Without it I would have wound up on welfare and well I'll omit the end of that phrase as to the outcome if I was in that situation...

 

[Jesse910]

I know this is weird, but I did not think about the paperwork. I just knew that I needed a job. For my son, I did not want him to be ostracized. However, I admit that I should have re-thought his education. I thought because private school worked for me that it was the right thing for him. I was wrong. He's nearly 21 and he is stuck.

 

[Jesse910]

I'm sorry that you have to worry so much. Yet, I am glad that are receiving care from people who do not belittle you. You are lucky.

 

[forgetmenot]

I hear you about worry about being cut off i worry the same about my daughter what happens if they cut off her disability what happens to her. Can your son Jessie910 still not get support for his schooling if he went in and got tested they would give him support he needed to move forward.

 

[Jesse910]

Hi FMN:
My son was finally tested when he was a junior in high school. Unfortunately, he is still in denial and we have gone the gamut: tutoring, counseling, medication. Currently, we are striving to be a supportive unit as parents with the caveat, that he must move forward and get a job. He will be 21 soon. We are providing minimal needs and small amounts of cash. He worked a temp job this summer. He has stated that he wants to return to school. However, he failed his classes. Support is available if he is willing to work within the parameters of the school. We have also offered to pay for additional counseling. He rarely leaves home.

 

[GaryQ]

That's sad to hear. At 21 he is just starting the journey into adulthood. So many possibilities and yet so much stigma and prejudice to overcome.

It is encouraging and nice to know that he has supportive parents on his side.

For that!

 

[forgetmenot]

I am glad your son has you and his father to help him. One thing that help my daughter was to have her tagged with an older student who would be there for her if her anxiety got to high or if she just needed to talk to someone or get help with her assignments. Medication changes different input from different doctors have all helped. With compassion that is the most important part of it all compassion i hope your son sees there is a way out there is a way to move forward. He is so lucky to have you and caring people in his life.

 

[Jesse910]

Thank-you FMN for your kind words. Yet, I am quite concerned because I believe my son is not only masking his depression, but also using marijuana in our home to lessen his emotion. Our son is very bright and lives with ADHD.

As he was growing up, I filled up his emotional tank with all love that I did not receive from my mother. Both my husband and I grew up in single parent homes. My parents divorced. My husband's parents never married. I feel like my son is vegetating. I have talked, listened, tried tough love to no avail. This is a young adult who is afraid to ride a bike, swim, or learn to drive a car. His bedroom is worse than a pig sty. He can carry on a conversation on various questions. Yet, if you ask him how he's feeling or what he's feeling, he shuts down. He is most loving with our 2 cats and dog. He is affectionate with me and tolerant of his Dad. He is respectful for the most part. He is not allowed to smoke in the house.

In addition to keeping myself together, I worry. If I had one wish, it would be to watch my son move into manhood, find something he enjoys, and commit himself to it while he explores other options.

 

[GaryQ]

From personal experience I think it has to come from him. But that’s the tricky part; how to get him to find something that inspires him or captivates and stimulates his high I.Q. without interfering or at a minimum not appearing to be intiicing. The mind of someone with ADHD that also has a high I.Q. is easily bored if not stimulated properly. When it is, and challenged, amazing things are possible.

Just had an idea... A shot in the dark... You could always try something that might or might not work and talk to him about the forum. Let him know he is not the only one in his situation. And you could always let him know that if he wants to discuss things with someone that can understand what he’s going through without mom knowing there’s always private messaging as an option.

I don’t know if things would’ve been different for me at his age if I had someone to communicate with that was not family or a menta Health worker. (Didn’t trust anyone) But life as an adult took hold and well did the best I could balancing a talented mind with the limitations of my “alphabet soup” it’s only in the last 3 years that I opened up and started learning about my issues. It’s really hard when you have no one that even has a basic understanding around you of what it’s like being as you are. Which applies to pretty much any mental health issue.

 

[Jesse910]

Gary: I never thought of this forum. I have been visiting here for years. I will give this some thought. Thank-you. And thanks FMN for allowing me to vent.

 

[forgetmenot]

ADHD my daughter has that too mind all over the place but she is not able to stay still walks miles and miles got her a membership that involves all activities swimming skating yoga and so much more she is enjoying that and it helps to keep her off the streets really. I am sorry your son is finding it hard to be social i found with this membership my daughter now at least she is among people although she does not talk to anyone much she still keeps to herself.

I always pray she meets someone a true friend but no that has not happened. I worry i really do what happens when were gone who do they reach out to then. Maybe Jessie if like said you can find what interest him what really interest him if it is animals maybe he would like to volunteer at a animal shelter or wildlife shelter something like that just to get him among other people just a thought I know you have tried.

 

[GaryQ]

FMN, the extreme physical hyperactivity tends to mellow out sometimes considerably as you get older. So there is hope for her in that regards. Was great idea finding a way to channel and release all that built up energy in a positive healthy way for her

 

[forgetmenot]

Just saying hi @Jesse910 just hoping all is well for you and your son hope it gets better.

 

[Jesse910]

Hi FMN:

And, I hope this Thanksgiving season will be peaceful for you. I am doing okay. I am somewhat cautious with new therapist, but forging onward. He understands and offers support. Yet, I am wary of trusting him. I need to protect myself and, I am okay with this.

My husband and I have sat down with our son to figure out where he is in his thinking and to try to assess how we might motivate and help him to help himself. There is much that he needs to work through. And, it is readily apparent that while he is an adult, he is going to need assistance throughout.

 

[forgetmenot]

(I need to protect myself and, I am okay with this.) I hear you i really do when you say this. I do understand also that although he is adult assistance will be needed throughout his life same with my girl. I am glad your husband is there to help you talk to your son and i wish the best for him. Protecting oneself i think also is a good thing for sure. I am glad you are taking care of you in that regard.