My friend whom I’ve known since high school, his son was just diagnosed with TYPE 1 diabetes. It’s tragic, he got 500 likes, hearts, and sad faces on FB.
Dare I post that my son has paranoid schizophrenia? I think not, the chances are good that people will run for the hills.
Why are so many physical ailments and conditions treated with respect and support, but not mental illness? People are so afraid to even say it, talk about it, and address it.
I’m sad for my friend and his son, but I know he won’t be facing the same struggles and the stigma that we face everyday as caregivers of sz. In fact, people will welcome them into their homes with open arms and shower them with emotional and mental support.
The margin is quite large. When it comes to MI, the silence is quite deafening. The indifference and stigma cut like a knife.
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Dear mbheart,
I know I’m in the minority here, but I firmly believe that friends and family should know about your afflicted loved one. Otherwise, for example, they will think you are avoiding them because you’re a snob or that something fishy is going on and you don’t care enough about their interest in what is going on in your life to give a true answer when they ask you why you and your loved one aren’t coming to their parties or functions or why you call in sick. I can understand why some people would not want to mention their loved one’s illness, but if we all keep quiet about it, nothing will change.
I have told everyone including my family, friends and people at work (bosses, managers) and over the past nine years, I have only received sympathy and understanding. (Most think I should leave him, but that’s a different issue altogether.) After I tell them, now they know when I’ve been up all night with my husband ranting and raving, not letting me get any sleep. They know I may suddenly cancel plans because my husband is having a crisis. They will know I am not able to travel to visit because I have spent the last of my money paying for my husband’s traffic tickets, overdraft fees and oh so expensive cigarettes. It’s not pretty, for sure, but it helps them to understand that I am caring for someone who is ill and that is why things might not always proceed according to plan.
If I were you, I wouldn’t post about your son right away, after his friend has just been diagnosed with diabetes, but I hope you do consider sharing with at least your closest friends. You know them best, though. This is just my two cents. I believe if more people were aware of the issues with the afflicted, they might be kinder to not only them but also to the caregivers. We can always hope!
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A book I recently read called if Your Adolescent Has Schizophrenia says you should be able afraid to tell people as a way to educate people… but I don’t agree with that completely… I think you need to be careful about who and how you tell them… the stigma is there… a good way to bring silence to a conversation… people will just not know what to say… What amazes me though is when some people do have empathy… saying they have been through it… we encountered this quite a bit actually… more than we expected… I usually ask my daughter if she thinks it’s okay to tell someone… she doesn’t want everyone to know… just the people closest to us.
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Hi @LifeIsHard, I understand where you’re coming from. And believe me when I tell you my decision to keep it to only 3 people closest to me (my older son being one of them), was the best decision I’ve ever made. The last thing I want is pity for my son, or for him to be looked down upon, or possibly even be ridiculed. However, alittle understanding would be nice. I don’t have much faith in human compassion, and it comes from years of enduring and eventually seeing people’s true colors.
I appreciate your positive-outlook on this, but for me, I’m comfortable where I am right now. I’m still not ready to let many people in, and it’s going on 5 years for us.
Believe it or not, im still processing and digesting…and hurting, the pain never goes away.
Wishing you peace…
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My fear in telling people sometimes is will they treat my daughter any different than if they didn’t know…
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@Windyhill63, yes, a conversation killer for sure. People are uncomfortable and it is an awkward topic.
And yes, I’m finding a lot more people were dealt the same hand as me, more than I thought. I think a lot of people keep it hidden (myself included), except on support forums like this where they feel comfortable enough to listen and discuss and partake. I just want to be around people who are in similar circumstances, if that makes sense. I feel sad and depressed being around people who seem to have a lot going for them.
I honestly believe there are a lot more of us than we think…
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@Windyhill63, exactly. The last thing I want is pity for him, I just want understanding and for him to be treated like everyone else, even keel, not extra special because of sz
Dear mbheart,
Of course I understand. Your situation is different as well in that it’s your son, not your spouse. My husband will not admit he is ill (unless he’s trying to use it for his advantage) so he would never want to let anyone know, but he knows I tell people what he’s going through. I actually have not found any pity from any one so far, just an understanding that if I am not the good old family member/friend/co-worker they are used to from the past, there is a reason that doesn’t involve them. I have lost a lot of friends because of my husband and don’t have anyone close to speak with any longer, so there has been a great loss in my life because of my involvement with my husband. If I had chosen not to tell anyone, they would have thought I was being a jerk or making up unreasonable excuses for not showing up, calling, visiting, etc.
I completely support you with your opinion and I am glad that you do have those three people close to you who know what’s going on. There is a lot of pain and processing. I wish the best for you, your son and your family. And at least this forum is here with people who do understand.
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From my perspective as an extended family member and not a caregiver, it was helpful to know that my SIL was sick. Her verbally abusive behavior started before some of the more obvious symptoms of SZ and before we knew some folks in the extended family couldn’t understand why she was suddenly so unkind and aggressive. Once I knew I took NAMI classes and tried to educate myself so I could understand what was happening. Knowing also explained a lot of my in-laws behavior too, things that before seemed strange or unkind or illogical. But you know your family and your situation best and I am sure that whatever you decide will be the right call for you and for your ill family member.
On the empathy front, I know in our family much of the lack of/limited amount of empathy comes from how SIL treats people. You can logically know she is sick but being on the receiving end of some of her behaviors, especially when it’s been ongoing for years, makes it pretty difficult to welcome her with open arms. And in our larger extended family stigma and lack of desire to educate oneself about mental illness has certainly also played a big role. It’s tragic all around.
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