invisibleschizoaffectiveschizophrenia

30 Things About My Son’s Invisible Illness

Chrisa Hickey12 comments2351 views

I read this on Melissa’s blog, and thought it was great – so here’s our 30 things, modified a bit to be from a mom’s point of view.

1. The illness my son lives with is: Schizoaffective Disorder, Bipolar Type

2. He  was diagnosed with it in the year: 2008, but some mood disorder since 2000.

3. But he had symptoms since: Birth

4. The biggest adjustment we’ve had to make is:living without him because he needs residential care

5. Most people assume: He’s older than he is because he’s always been huge

6. The hardest part about mornings are: Getting him out of bed (when he’s home)

7. My favorite medical TV show is: House.  He likes House too.

8. A gadget I couldn’t live without is: My cell phone.  He can’t live without his stereo.

9. The hardest part about nights are: For me, when he was living at home, it was fear that he’d hurt someone or himself.  

10. Each day he takes 10 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: wish.

12. If I had to choose between an invisible illness or visible I would choose: For him?  I don’t know.  I think that it would be harder for him to have an illness that limits his mobility, because he enjoys sports so much.  That would be worse for him, I think.

13. Regarding working and career: He never will.  Never.  I’ve resigned myself to that fact.

14. People would be surprised to know: He is extremely artistic and will still sit in my lap, all 6 feet, 170 pounds of him.

15. The hardest thing to accept about my new reality has been: That he’ll never be able to be who he wanted to be when he grows up.  No chance he’ll be a pilot or police officer.

16. Something I never thought he could do with his illness that he did was: Learn to read.   It took 10 years, but he’s reading just slightly behind grade level now.

17. The commercials about his illness: don’t exist.

18. Something he really misses doing since he was diagnosed is: living at home.

19. It was really hard to have to give up: My child.  To strangers.

20. A new hobby I have taken up since his diagnosis is: blogging.  

21. If I could have one day of his feeling normal again we would: teach him to drive.  

22. His illness has taught me: patience.

23. Want to know a secret? One thing people say that gets under my skin is: I’m sorry.

24. But I love it when people: As questions about his illness.

25. My favorite motto, scripture, quote that gets me through tough times is: “Be who you are and say what you feel – those that mind don’t matter, and those that matter don’t mind.”  — Dr. Seuss

26. When someone’s child is diagnosed I’d like to tell them: You will get through this.  The symptoms and behavior are not  your child.  They are the illness.

27. Something that has surprised me about living with a mentally ill child is: how much wonder he still had / has in the world

28. The nicest thing someone did for me when he wasn’t feeling well was: give my other children time away from the chaos with sleepovers and dinner.

29. I’m involved with Invisible Illness Week because: childhood mental illness is real – and needs to be recognized.

30. The fact that you read this list makes me feel: one more person may understand that there is nothing shameful about schizophrenic disorders, that Tim’s not dangerous, and that one more person may realize that the stigma of mental illness is a fallacy.

I selected this post to be featured on my blog’s page at Mental Health Blogs.

12 Comments

  1. I can relate to your list. I love what you said about how you like it when others ask about your son's illness. I always feel so supported by others who ask questions about my son, who ask how we're doing as oppose to others who pretend that we are a "normal" family when they know that isn't the case.

  2. I love your list. I like it to when people ask about my sons illness. If I had one wish it would be to educate everyone on mental illness. My experience has been that no one wants to be around my son and I feel that he is lonely.
    Your blog is a great idea. It would probably help me greatly if I at least wrote about my sons illness instead of keeping it inside.

  3. My child is younger than your precious Tim. He is 10 and very symptomatic of serious mental illness. He is medicated and it's working somewhat. I know I can come here and get encouraged when you write. I love this list and makes all the sense in the world. Thank you for being so open.

  4. I followed a link to your list from twitter. Your list is great, and helps others understand what it is like to have children with illnesses that significantly affect their lives and those of their families. I have two kids who have chronic illnesses. They don't have mental illnesses–ours are Crohn's disease, liver disease, and migraines. I appreciate reading about your son and your life. Thanks for sharing.– Rachel.

  5. I followed a link from Facebook. Not sure if you will feel I belong here, as it isn't my child but ME who has the invisible illness – rapid cycling BiPolar disorder and severe anxiety disorder. I am 43 years old, and the things I read here just now made me feel understood, nurtured and valued. It is hard for me to separate my "self" from my illness. I appreciate the distinction here. Thank you for sharing.

  6. Mellissa, You belong anywhere you need to be. It's reassuring for us parents to hear from a 43 year old who is so self-aware and dealing with all this. Thanks for sharing. I hope you find some answers for yourself.

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