30 Things About My Invisible Illness You May Not Know
mariadeira filled this out and I felt compelled to do the same!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Poly Cystic Ovary Syndrome
2. I was diagnosed with it in the year: The term was used to describe my symptoms around 1997, but I didn't get a doctor that recognized and treated the syndrome till about 2003.
3. But I had symptoms since: I've always known there was something wrong with me, but we never knew what it was. PCOS is a syndrome and there is no known cause, but for me it is most likely genetic and related to hormone production. My doctor calls it a "vicious cycle" were obesity, hormones/insulin production, menstrual cycle, and other issues are chasing themselves around with no clear cause and effect relationship.
4. The biggest adjustment I’ve had to make is: taking medication and dealing with stress and fatigue.
5. Most people assume: Some doctors assume I want treatment for infertility and want to get pregnant. Most people and some doctors assume I eat too much and therefor I am fat and so this is my fault.
6. The hardest part about mornings are: I am not a morning person.
7. My favorite medical TV show is: I don't have one.
8. A gadget I couldn’t live without is: No gadgets really help me with my illness, but I love my computer and dvr.
9. The hardest part about nights are: I get hot flashes most evenings, after I take some of my meds I think. I've gotten them other times but its rare.
10. Each day I take 5 different medications & 2 vitamins.
11. Regarding alternative treatments: I only do alternative treatments my doctor suggests. Taking most of the medication I take would be considered "alternative" because there is no cause or cure for PCOS. We just chase the symptoms as they pop up.
12. If I had to choose between an invisible illness or visible I would choose: Living with PCOS I do get frustrated because it is a visible illness no one knows to look for. I have excessive hair growth on my chin. I carry my weight in my trunk/back region where as most woman carry it in their legs/thighs/butt or lower than I look. Pants are a pain to shop for! I have dark patches of skin on my elbows and back of my neck, but those have gotten much better since I started taking meds.
13. Regarding working and career: I had a very stressful job at a call center. I started to get anxiety attacks and depression. It took me years to realize it was out of my control and no matter how hard I worked at it wasn't going to change because it wasn't me it was the illness. If I subject myself to stress my body will react negatively, more so than "normal" people. It's hard to wrap my head around that still. I am not the illness and it is not me, but we live together and I have to make it work because the illness is not going anywhere. So quitting that job was scary and a huge financial risk, but my health improved! I hope I make better choices from now on.
14. People would be surprised to know: That I have fatigue. I think people think I am lazy and I say I am, but sometimes I am just exhausted. I need more than average sleep or I am a terror to be around.
15. The hardest thing to accept about my new reality has been: having anxiety attacks. I call it short-span manic. I'll go through highs and lows really quickly - minute to minute. I usually just need to eat something or rest when it happens, but they feel like whirlpools sucking me down and its hard to snap out of that vicious cycle.
16. Something I never thought I could do with my illness that I did was: Get diagnosed, get treatment.
17. The commercials about my illness: don't exist!
18. Something I really miss doing since I was diagnosed is: I could swear I handled stress better when I was younger, but I wasn't getting treatment and I was sick a lot so I was probably just fooling myself.
19. It was really hard to have to give up: Money! Paying for all the drugs and the testing and all that stuff sucks!
20. A new hobby I have taken up since my diagnosis is: Telling people I have an illness.
21. If I could have one day of feeling normal again I would: No clue what normal would be! PCOS shapes so much of what I am physically and mentally I might be a totally different person. One day wouldn't be enough. I wouldn't notice.
22. My illness has taught me: I know my body and if I say something is wrong then it is.
23. Want to know a secret? One thing people say that gets under my skin is: "Have you tried (insert diet fad, pill, or surgical procedure) to loose weight?"
24. But I love it when people: Accept my limitations.
25. My favorite motto, scripture, quote that gets me through tough times is: I don't use this for tough times or my illness but my favorite quote is Oscar Wilde "Life is too important to be taken seriously."
26. When someone is diagnosed I’d like to tell them: Be determined! You need to take meds and try to find what works for you. Most people blame themselves that they are fat and depressed and it is their fault, but if you have PCOS something is wrong and you need to work to make it livable!
27. Something that has surprised me about living with an illness is: I was happy to have a name for it, but I think some people are scared and worried when it has a name. I notice that some of my family doesn't like me naming it.
28. The nicest thing someone did for me when I wasn’t feeling well was: My mom puts up with me and takes care of me when I am not feeling well. Sometimes I can be bitchy and I think I wouldn't want to live with me so I am glad she is willing to help as much as she does. My friend Maria listens to me vent and gives me tons of support! She's lived with me too and doesn't mind the bitchy rants!
29. I’m involved with Invisible Illness Week because: My friend Maria filled this out. She has lupus. So many years there were no answers for why she was ill and it made me angry and frustrated! I am still angry and frustrated! Sickness sucks! But being her friend and helping her out and getting help in return, I know we are both lucky! I hope sharing our stories helps other people with illness seek out that type of friendship.
30. The fact that you read this list makes me feel: Thankful! And I hope that if you have any problems physically or mentally you will find determination to seek help and support.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Poly Cystic Ovary Syndrome
2. I was diagnosed with it in the year: The term was used to describe my symptoms around 1997, but I didn't get a doctor that recognized and treated the syndrome till about 2003.
3. But I had symptoms since: I've always known there was something wrong with me, but we never knew what it was. PCOS is a syndrome and there is no known cause, but for me it is most likely genetic and related to hormone production. My doctor calls it a "vicious cycle" were obesity, hormones/insulin production, menstrual cycle, and other issues are chasing themselves around with no clear cause and effect relationship.
4. The biggest adjustment I’ve had to make is: taking medication and dealing with stress and fatigue.
5. Most people assume: Some doctors assume I want treatment for infertility and want to get pregnant. Most people and some doctors assume I eat too much and therefor I am fat and so this is my fault.
6. The hardest part about mornings are: I am not a morning person.
7. My favorite medical TV show is: I don't have one.
8. A gadget I couldn’t live without is: No gadgets really help me with my illness, but I love my computer and dvr.
9. The hardest part about nights are: I get hot flashes most evenings, after I take some of my meds I think. I've gotten them other times but its rare.
10. Each day I take 5 different medications & 2 vitamins.
11. Regarding alternative treatments: I only do alternative treatments my doctor suggests. Taking most of the medication I take would be considered "alternative" because there is no cause or cure for PCOS. We just chase the symptoms as they pop up.
12. If I had to choose between an invisible illness or visible I would choose: Living with PCOS I do get frustrated because it is a visible illness no one knows to look for. I have excessive hair growth on my chin. I carry my weight in my trunk/back region where as most woman carry it in their legs/thighs/butt or lower than I look. Pants are a pain to shop for! I have dark patches of skin on my elbows and back of my neck, but those have gotten much better since I started taking meds.
13. Regarding working and career: I had a very stressful job at a call center. I started to get anxiety attacks and depression. It took me years to realize it was out of my control and no matter how hard I worked at it wasn't going to change because it wasn't me it was the illness. If I subject myself to stress my body will react negatively, more so than "normal" people. It's hard to wrap my head around that still. I am not the illness and it is not me, but we live together and I have to make it work because the illness is not going anywhere. So quitting that job was scary and a huge financial risk, but my health improved! I hope I make better choices from now on.
14. People would be surprised to know: That I have fatigue. I think people think I am lazy and I say I am, but sometimes I am just exhausted. I need more than average sleep or I am a terror to be around.
15. The hardest thing to accept about my new reality has been: having anxiety attacks. I call it short-span manic. I'll go through highs and lows really quickly - minute to minute. I usually just need to eat something or rest when it happens, but they feel like whirlpools sucking me down and its hard to snap out of that vicious cycle.
16. Something I never thought I could do with my illness that I did was: Get diagnosed, get treatment.
17. The commercials about my illness: don't exist!
18. Something I really miss doing since I was diagnosed is: I could swear I handled stress better when I was younger, but I wasn't getting treatment and I was sick a lot so I was probably just fooling myself.
19. It was really hard to have to give up: Money! Paying for all the drugs and the testing and all that stuff sucks!
20. A new hobby I have taken up since my diagnosis is: Telling people I have an illness.
21. If I could have one day of feeling normal again I would: No clue what normal would be! PCOS shapes so much of what I am physically and mentally I might be a totally different person. One day wouldn't be enough. I wouldn't notice.
22. My illness has taught me: I know my body and if I say something is wrong then it is.
23. Want to know a secret? One thing people say that gets under my skin is: "Have you tried (insert diet fad, pill, or surgical procedure) to loose weight?"
24. But I love it when people: Accept my limitations.
25. My favorite motto, scripture, quote that gets me through tough times is: I don't use this for tough times or my illness but my favorite quote is Oscar Wilde "Life is too important to be taken seriously."
26. When someone is diagnosed I’d like to tell them: Be determined! You need to take meds and try to find what works for you. Most people blame themselves that they are fat and depressed and it is their fault, but if you have PCOS something is wrong and you need to work to make it livable!
27. Something that has surprised me about living with an illness is: I was happy to have a name for it, but I think some people are scared and worried when it has a name. I notice that some of my family doesn't like me naming it.
28. The nicest thing someone did for me when I wasn’t feeling well was: My mom puts up with me and takes care of me when I am not feeling well. Sometimes I can be bitchy and I think I wouldn't want to live with me so I am glad she is willing to help as much as she does. My friend Maria listens to me vent and gives me tons of support! She's lived with me too and doesn't mind the bitchy rants!
29. I’m involved with Invisible Illness Week because: My friend Maria filled this out. She has lupus. So many years there were no answers for why she was ill and it made me angry and frustrated! I am still angry and frustrated! Sickness sucks! But being her friend and helping her out and getting help in return, I know we are both lucky! I hope sharing our stories helps other people with illness seek out that type of friendship.
30. The fact that you read this list makes me feel: Thankful! And I hope that if you have any problems physically or mentally you will find determination to seek help and support.