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Invisible Illness Awareness Week: 30 Things I Want People to Know

Posted Sep 16 2011 12:00am


Hey, everybody! It's Invisible Illness Awareness Week . This goes on each year. I encourage you to download this meme , and participate with your blogs.

1. The illness I live with is: I live with Sjogren's Syndrome, Fibromyalgia, associated conditions to those such as hypothyroidism, peripheral neuropathy, a vestibular disorder, arthritis, etc. I also have prediabetes which is related to medications I have to take for my psychiatric invisible illness, Schizoaffective Disorder, the one that has most impacted my life.


2. I was diagnosed with it in the year: In 1996 I was told I had Fibromyalgia and Chronic Fatigue Syndrome. In 1999 it was Dysautonomia, and one doctor said "Sjogren's Syndrome". It's so fun getting diagnosed with an autoimmune disease, as they test you for everything under the sun.
In 2005 I was finally diagnosed with the Schizoaffective Disorder, after several years of constant psychosis. That diagnosis saved my life.

3. But I had symptoms since: since I was 14 (1989) I had depression, and some physical symptoms started when I was 19 (1994).

4. The biggest adjustment I’ve had to make is: Wow. I have had to adjust everything. I had to leave college for years because I was both physically and mentally sick and could not continue with that. I could not work for years, physically or mentally. I now have gone back to college part time, and have been doing that for almost five years. I now work part time, and have been doing that for five years. I had to go on disability benefits when I was in my early 20's.

5. Most people assume: That I'm perfectly healthy. But that I take a lot of time off work for doctors appointments and they probably wonder why that is. Or, if I tell them anything about my illnesses, the physical ones make them think I'm a hypochondriac, and the psychiatric one makes them think I'm an abnormal freak. Which is why I am careful about who I tell, and what I tell them. That said, when I do public speaking and advocacy work, people tell me I'm strong, and resilient, and surprisingly capable.

6. The hardest part about mornings are: Waking up; I have terrible insomnia which is a major problem that affects many parts of my life and worsens all my health problems

7. My favorite medical TV show is: Grey's Anatomy. I know it's not always accurate, and it's fluff, but I like the writing.

8. A gadget I couldn’t live without is: My medications. They saved my life. And my computer, which, at my sickest, was my only connection to the world.

9. The hardest part about nights are: Trying to get to sleep, which takes hours, and hours and many medications to ever happen.

10. Each day I take __ pills & vitamins. (No comments, please) Right now, 11 plus one injection every two weeks.

11. Regarding alternative treatments I: I have had physical therapy and I had some electrostimulation and massage with that which was very helpful, but I can't afford all the copays that are required with Medicare, and I don't have a lot of free time right now to go to physical therapy. Psychotherapy and case management helped me immensely, for years. I had four years of therapy recently which was very useful.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. I hate the assumptions people make about me not having anything wrong to deal with in my life, and I hate that people are so ignorant about these illnesses and lack awareness, and I hate all the stigma that enshrouds mental illness which is something I do advocacy to combat. But I have to be honest, I would rather not be in a wheelchair, as it instantly makes me people identify you as "disabled" without often giving you the chance to show which you still can do.

13. Regarding working and career: It's very hard. I have a hard time working just 25 hours a week. I cannot make much money because if I get paid too much I'll lose my benefits and my healthcare, which is vital to my survival, and I do not feel capable of working full time yet. I hope to be able to do so in the future, and that hope is what propels me to continue in college, working towards a B.A. degree even though I am 36 years old, and some people think that is silly. I hope to go into the field of social work to help others, because I feel that is what makes life valuable in many ways, and I want to help people with mental illnesses, if I can, because I understand what they are dealing with from the inside out, and I want to make a difference in their lives. I also feel that if I can get a degree and a full time job, I'll finally be viewed as "acceptable" to some of society, and I'll finally feel fully self-sufficient, which in a way, is not right, because I should be able to feel like a perfectly acceptable human being right now, since I'm doing as much as I can do.

14. People would be surprised to know: That I often want to go home and go to bed. I put on a good smile, and I'm generally a pleasant person, I think, but I often get exhausted, stressed, and don't want to have to deal with all of the tasks of daily life, because I am just so tired. I also think most people would surprised about what I've been through from being sick in the past, such as homelessness and utter poverty, living in homeless shelters, a car, and motels. People who know me and don't know I have a mental illness have no idea what I have lived through, all my suicide attempts and my bare survival, and my recovery, which was hard, and definitely worthwhile, and which is still a delicate balance.

15. The hardest thing to accept about my new reality has been: I was going to go to Smith College in 1999. I couldn't do it; I was too sick. I will never be able to do it. I may never be able to get a Master's Degree, as getting a Bachelor's is hard enough and putting me in extreme debt. I may never be able to travel the world, as I may never make enough money to do that or feel up to doing that. I may never get married, because I don't even date since explaining all that I deal with health wise is too much for me to deal with, and I don't want to bother putting myself out there for rejection. My last relationship was the longest relationship I've had, and I went through a painful break-up from that three and a half years ago, but haven't gone on a date since. I will never have children.

16. Something I never thought I could do with my illness that I did was: Getting my Associate's Degree last year, and doing public speaking about my mental illness to people such as groups of police officers in Crisis Intervention Team Training. I was shy all my life, but I have enjoyed telling my story to educate people  and explain what it's like to be psychotic.

17. The commercials about my illness: There are some SAMHSA commercials about mental illness; I think they're stupid and don't explain much of anything. There are no commercials for Sjogren's. But there have been some tv programs covering it since Venus Williams came out with the fact that she has it. The only ones there are for Fibromyalgia are drug company commercials, but at least that means people are admitting it's a real illness now. Years ago, nobody had heard of Fibromyalgia.

18. Something I really miss doing since I was diagnosed is: I miss being a kid and being healthy. I miss being a person with a lot of potential as a child, and planning on going to college and having a great career. I miss those dreams. I have different dreams and goals now than I did then.

19. It was really hard to have to give up: Drinking tons of Diet Coke that I thought was keeping me going but was really unhealthy for me. Sometimes, I still drink it but not like before when I was heavily addicted for years. I also miss being thin, and feeling attractive physically. The medications I take for Schizoaffective Disorder, in addition to my health conditions, have led me to gain 100 pounds in just a couple years. It has been really damaging to my self-esteem, and it has made me prediabetic. Also, it has been hard to give up being able to run around and do things, and stay up all night, without needing much sleep, though it has been many years since I have been able to do that.

20. A new hobby I have taken up since my diagnosis is: Blogging! I love this blog, and it has given me a place to talk about my life with mental illness for the past six years. It has been a wonderful place of solace and support for me, which I really needed and still need. And it has given me a place to use my voice and tell my story. Also, public speaking! I am an advocate with the National Alliance on Mental Illness now, and I have been for a few years.

21. If I could have one day of feeling normal again I would: I don't think I'm "abnormal". I think I have challenges, and everybody else has their own challenges. I don't know what it what mean to feel "normal". Most of my life, I've had these challenges. I have learned to deal with them. Though, it would be fun to go running once. I've never been able to do that.

22. My illness has taught me: That I know more about my body than some doctors and that I must listen to it, and pay attention to the signs that it gives me. It has taught me that I need to rest, whether I want to or not. It has taught me to adjust all aspects of my life. I do a desk job. I can't do a job where you stand on your feet all day. It has taught me that people with disabilities are regular people, and often very resilient people, and that people with mental illnesses are incredibly stigmatized to this day. It has taught me to speak UP.

23. Want to know a secret? One thing people say that gets under my skin is: "You don't look sick".

24. But I love it when people: Listen to my story or ask me questions. I love it when I do public speaking and people pay attention and get interested in learning about mental illness. I love it when people read my blog and take interest in it. I love it when I connect with other people who live with illnesses.

25. My favorite motto, scripture, quote that gets me through tough times is: "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed it is the only thing that ever has." -Margaret Mead
"Your silence will not protect you." -Audre Lorde

26. When someone is diagnosed I’d like to tell them: It gets better. Recovery is possible, treatment is available, life is livable, it's not the end of the world. Happiness and feeling competent and having successes is possible too. I think particularly people with mental illnesses lose hope of those things, but those things are very possible. I also think you have to take control of your own recovery, and be your own best advocate, and do what it takes to get the help that you need, or your life will not be one you enjoy. It's not fun, and it's often a hassle, but if you don't get treatment, you may never be able to do the things you could do if you did.
27. Something that has surprised me about living with an illness is: That I have managed to adjust my entire life to accommodate these challenges, and now, it's okay. I have bad days, and I have a lot of fatigue, and I sometimes even have psychosis (mildly), but I live my life, and generally, I am able to do enough to be functional, and sometimes happy. I didn't think that would ever happen in the past.

28. The nicest thing someone did for me when I wasn’t feeling well was: My case manager, when I was in severe depression, would come over to my house, and literally pick up trash and throw it out with me, so I could clean up the terrible, overwhelming mess that I had allowed to accumulate because I had given up on it. She has been there for me and has said so many times that I'm doing great, and that I'm surprisingly able to accomplish more than people would think I could with my mental illness, and she has really boosted my self esteem and been a general life line for me for six years.

29. I’m involved with Invisible Illness Week because: Invisible Illness has affected all aspects of my life, just as it has affected millions of other people who feel silenced by their lack of visibility, and so much ignorance exists about these illnesses that we need all the awareness campaigns we can get!

30. The fact that you read this list makes me feel: Hopeful, and appreciative.

I encourage you to read Jennifer Pettit's 30 things too, and to write your own on your blog!


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