30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Bipolar Disorder
2. I was diagnosed with it in the year: 1987
3. But I had symptoms since: 1983
4. The biggest adjustment I’ve had to make is: I started to struggle with depression at the age of 13 and had my first manic episode when I was 17. At the time, I was embarrassed and humiliated and honestly thought I was crazy and weak. I have had to readjust my thinking to I am a strong person living with an illness that affects my life every day. I have tried to think that this is something I should be proud of not ashamed of.
5. Most people assume: Unfortunately, with the stigma of mental illness, many people think that I am violent. I really think that those who are uneducated think I am crazy. It is frustrating because some people think I am weak and others think I am faking it or that mental illness does not even exist. Many think they should steer away from being my friend or from being associated with me.
6. The hardest part about mornings are: When I am depressed, it is hard to even get up out of bed and get motivated. Sometimes I wish that I could just go back to sleep and not deal with anything. When I am manic, since I have a lot of energy, I am ready to go and there really isn’t anything hard. However, there is the challenge of not doing things I will regret, remembering to eat, and to relax.
7. My favorite medical TV show is: ER
8. A gadget I couldn’t live without is: My laptop
9. The hardest part about nights are: When I am depressed, it is when I am trying to get to sleep I think very negatively and it is hard to keep my mind off of them. I often replay all the horrible things I have done when I was manic. If I am getting manic, I can’t sleep and toss and turn and worry that I am getting manic. If I am manic, I oftentimes don’t sleep.
10. Each day I take __ pills & vitamins: I currently take 2 meds regularly and 2 vitamins, but have 3 that I can use if needed. Over the years, there have been times I have taken 16 meds at a time.
11. Regarding alternative treatments I: I believe that people holistic approaches are important. I think in most cases, with mental illnesses, it is hard to control without some medications. Unfortunately, many psychiatrists push medications with the encouragement of the pharmaceutical companies. It has been hard to find a doctor who is willing to work with me with an alternative approach.
12. If I had to choose between an invisible illness or visible I would choose: I think having a serious mental illness is awful. It is not only invisible, but many people don’t understand it and judge you. I would not wish my illness on anyone. The cliche “the grass is greener on the other side” applies here though. I think my illness is awful, but until I were to live with another illness, I could not really say. I have had dystonia (I could not lift my head up-my chin was attached to my chest). If I were to compare bipolar disorder to that, I would have to say that even though the dystonia was awful, I would rather have that than bipolar disorder.
13. Regarding working and career: Although I struggled with mania and depression while in college, I was able to graduate. I have worked several jobs including being a teacher for over 9 years. However, due to being in the hospital 16 times in a year for my mental illness and other serious medical issues, I had to go on disability. When I am up to it, I have worked part-time for a relative, mainly at home where I can set my own hours. He also understands that sometimes I am just not able to work.
14. People would be surprised to know: Despite having a mental illness, I have never been in jail and never done anything violent. I have accomplished a lot in my life. I was the president of several clubs in high school. I was the grade level chairperson, organized successful school wide events, and was even was Teacher of the Year one year.
15. The hardest thing to accept about my new reality has been: People are going to judge me and there is not much I can do about it. I have to ignore those people and know that I am a fighter and am a good person despite my mental illness. Also, going on disability was a very hard thing to do as I have always been a hard worker. I hate the question, “what do you do for a living?”. Honestly, rarely do I admit that I am on disability.
16. Something I never thought I could do with my illness that I did was: I have always reached for the starts and unless I am depressed, I don’t and won’t let my mental illness stop me from making a difference. I also didn’t think I would be accepted by people and be loved. However, I have some really good friends and am married to a wonderful, patient man who is very supportive.
17. The commercials about my illness: So many of them are advertising medications, unfortunately. It saddens me that so many people with mental illnesses are talked into taking really expensive medications that don’t have a generic yet. Once in awhile, I will see a public service announcement about mental illness that are encouraging. There are people out there making a difference when it comes to educating others and reducing the stigma.
18. Something I really miss doing since I was diagnosed is: I wish I knew what normal was. I am not sure if I ever will. It is hard to plan anything in the future because I don’t know how I will be feeling.
19. It was really hard to have to give up: It was hard to give up working full-time. I have always been a hard worker. Admitting that the stress was too much, was a really difficult thing to face.
20. A new hobby I have taken up since my diagnosis is: I blog about my bipolar disorder and run several social media sites that deal with mental health advocacy and mental illness. I also started an advocacy group on FB.
21. If I could have one day of feeling normal again I would: I am not sure if I would know what normal is. However, if I knew I was going to stay that way, I would get a job and plan a vacation not having to worry about if I would be too depressed to enjoy it or manic and risk doing things I would regret.
22. My illness has taught me: My illness has taught me perseverance. It has taught me to try and leave things I have done in the past and move on. It is hard to forgive myself especially when I have hurt the people I love. This often takes time, but is very much needed. If I were to dwell on all the mistakes I made when I was manic, I would stay depressed indefinitely.
23. Want to know a secret? One thing people say that gets under my skin is: It really upsets me that when someone commits a violent crime that the media so quickly wants to talk about how the person had a mental illness. This often happens before it is even confirmed. I wish the media would not contribute to the stigma and instead educate people that less than 1% of the people with mental illness are violent. It saddens me that they share all their opinions and yet very rarely use the opportunity to educate people about mental illness, let people know that it is okay to get help, and give resources of where people can go if they need help.
24. But I love it when people: When someone accepts me for who I am. It is really amazing when they want to know more about my illness and what they can do to help me.
25. My favorite motto, scripture, quote that gets me through tough times is: The “Don’t Quit” poem was given to me by my dad when I was first struggling with my illness. I have included it below. It has gotten me through some very hard times.
26. When someone is diagnosed I’d like to tell them: I would like to tell them I am sorry and how awful my struggles have been. However, I don’t because I don’t want to discourage them. Instead, I let them know I am here if they ever need anything. I also let them know they still can do anything they set their minds to. I sometimes let them know that it will not be easy, but it depends on the person and situation. I let them know that it is important to have a support system and an action plan if I get the chance to talk to them in great detail.
27. Something that has surprised me about living with an illness is: I have been able to help others through my blogging, FB group and page. I can still make a difference even though I am not getting paid. It is good to know that there are days that I am hopeful that they will find a cure and that stigma will be erased. Thinking that gives me great hope.
28. The nicest thing someone did for me when I wasn’t feeling well was: My mom was always there no matter how badly I had treated her. Just having someone to listen and not judge is invaluable. She passed away less than a year ago and this has caused a huge void as she was one of the very few people who really tried to understand and would do anything to help me. She loved me unconditionally, was a great listener, often knew exactly the right thing to say and had a way of making me feel special and accepted no matter what I had done. She also was good about encouraging me and sometimes gave me the “kick in the butt” that I needed.
29. I’m involved with Invisible Illness Awareness Week because: I think it is important that others know about the various illnesses so there is less judging and more understanding. I hope that some day people accept us for who we are. Until then, weeks like this are necessary. I appreciate you having this important time when people can share their story and educate others.
30. The fact that you read this list makes me feel: I am glad that you took the time to read it and thank you for caring enough to do so. I hope that you take some time to learn more about bipolar disorder and the other mental illnesses and share something you learned with someone else. It is through education that we can change the way society views mental illness.
This blog about my invisible illness and other people’s stories can be found here: Invisible Fight: Invisible Awareness Week 2015