Telling Others About Your Illness

For a long time, I actively rebelled against disclosing any information about my schizophrenia, even avoiding the subject matter altogether so that I wouldn’t have to tell people I had it.

I remember bringing one of my books to a friend at a bar one night, and an older woman struck up a conversation with me about it. Disclosing was pretty unavoidable due to the book being specifically about my psychotic break. When she asked me if I had schizophrenia and I said yes, she actively recoiled and shook her head as if to get a rotten taste out of her mouth.

In another instance, I was on a first date with a woman and she asked what I did, as is customary, but against my better judgment, I told her that I write about living with schizophrenia, she proceeded to ask if I have ever killed anybody.

The point of all this is to say that schizophrenia is a frightening word and, though it has lessened in recent years, there is still a great deal of stigma surrounding major mental illnesses.

Those instances are only two examples of myriad circumstances I’ve been part of where disclosing my illness has dramatically altered and in some cases ended entire interactions.

Throughout my writing career it’s been a challenge not to disclose, given the subject of my work, and I’m sure that contributed to a long period of burnout I experienced for almost 5 years.

During that time though, I didn’t have to tell anybody and that was a breath of fresh air.

Also during that time, society shifted its view of mental illness thanks to the millions of young people being open about their anxiety and depression on social media and across the internet.

Many famous people have also disclosed their struggles with mental illness.

Because of that, the word “schizophrenia” doesn’t have the weight it used to, and people, myself included, are more willing to speak about their struggles with the illness.

That said, if you’re afraid to tell people about your diagnosis, that is perfectly valid and rational given the media’s portrayal of major mental illness and the resulting stigma.

You don’t have to tell anyone if you don’t want to and it’s perfectly acceptable to keep it to yourself.

Hopefully you have a strong circle of support where you can feel safe discussing your struggles but if you don’t there are groups and resources available.

Disclosing your illness is entirely up to you.

Even I’m still guarded about it but if you feel compelled to express yourself and find community, this blog is a safe space.

I wish you guys the best and please remember, you’re never alone.

The Importance of a Strong Support Structure

I count myself extremely fortunate for the support of my family and friends. I feel blessed knowing that I’ve got this network of good people that can help me if and when a problem arises and I value that tremendously.

That said, there are a lot of people out there with mental illness who can’t count on a support network like I can.

It hurts my heart to know that people are struggling with both the illness, as well as the lack of help from any family or community structure. A strong support network is, in my opinion as important as the medicine I take for my illness, and without it I don’t know where I’d be, or what I’d be doing with myself.

In all honesty, I imagine I would be out on the street somewhere or, in the worst case, I may not have survived.

Knowing that you can count on people to help when the need arises provides a comfort and a security that to me, have been essential. This security gives you a space to recover in safety and to gain your footing in a place of love rather than a place of uncertainty.

I’m grateful that I’ve had that provided to me.

For some folks, their family is gone and so they no longer have the safety of a home network, for others, their family just doesn’t acknowledge or take the time to understand mental illness so again, these people have to find some way to fend for themselves. Still for others, they find themselves in communities that don’t have the essential and necessary means to deal with mental illness and the things that come along with it (homelessness, addiction).

It’s important that we provide support for these people in any way that we can.

Dealing with and recovering from mental illness has been one of the greatest struggles of my life and without the support that I have had, I doubt I would have survived these 16 years. Getting by without the support of my family would have been impossible. It’s for this reason that support on a familial and community level is, I believe, essential to recovery for the millions out there with major mental illness.

If I could introduce a bill or if I had the resources to create a place for that support I would pour every cent that I could into it. A safe community for people like me would make the difference between life and death for, I’m sure, a majority.

We may not have that level of support for everyone but for now, the best we can do is rely upon the services of organizations like NAMI to provide education for mental illness.

Families of those suffering need to, first, know they’re not alone, and second, try to educate themselves on the realities of mental illness in order to best support their loved ones.

If you are a caretaker of a person with mental illness, look into the family to family class offered by NAMI to familiarize yourself with the reality of caring for your loved ones with mental illness. There are other classes as well offered by different organizations but creating a support network for your loved ones is one of the most important things you can do after a diagnosis.

Also, realize that you are not alone in this experience and that millions of people and their families are going through the same thing.

All things considered, I wouldn’t be where I am now without the support of my family and my community.

Creating a strong support structure is and will be one of the most important things you can do for your loved one and if there’s any way for your to help, education is key. Learn everything you can about this diagnosis and what it means for both you and your loved one, it will provide guideposts that may not be apparent at first and it will create an understanding of the realities of what it’s like to live with mental illness.

Your love and support will make the difference to your loved one and it will show them that you’re there.

Again, you are not alone, your family is not alone and there are resources for you out there. You’ll get through this, I promise.