Invisible Illness

Invisible Illness

Tuesday, September 1, 2009


Hi All,

I am not posting any scrapping projects with this particular post because it needs to stand on it's own. I will post something later, though, so please keep an eye out. Until then, I hope that you will all take the time to read this.

Next week is Invisible Illness Week - it is a week when people who have invisible chronic illnesses - illnesses that cannot be seen on the outside of a person's body - come together to spread the word about all types of invisible illnesses. You all know by now, my invisible illness is Trigeminal Neuralgia or TN. To look at me you would not know I am ill. Unless my meds are making me bloated :( Usually, I look pretty normal. People with invisible illnesses look fine on the outside, for the most part, but are stricken with pain and sickness on the inside. Often, people don't even believe when invisible illness sufferers tell them we are sick, they think we are making it all up, wanting attention, wanting to be the center of everything, when those things are the farthest from the truth! Even doctors have told invisible illness sufferers we were making it all up and needed to see a mental health professional. The whole time, our pain and illnesses are VERY real.

I hope you all will take a few minuets to read the following list I am posting in honor of Invisible Illness Week. The word needs to be spread about all types of invisible illness. I hope to do what I can about spreading the word about my particular illness.

Anyone that suffers with an invisible illness, or suffers through watching a loved one struggle with one, please feel free to leave a comment. All are encouraged to leave comments as long as they are positive ones.

For anyone who wants to know more about Invisible Illness Week, I will post information at very the bottom of this post.


1. The illness I live with is : Trigeminal Neuralgia

2. I was diagnosed with it in the year : 2007

3. But I have had symptoms since : 2003

4. The biggest adjustment I've had to make is : Not being able to do anything spontaneously. I ALWAYS have to plan everything out to the last minute, even then, sometimes, I can't do what was planned because of the weather and my elevated pain level.

5. Most people assume: Trigeminal Neuralgia is not as bad as I am making it out to be.

6. The hardest part about mornings is: I usually do better in the mornings, my pain is almost always at it's lowest then. When it is not, eating breakfast can be the hardest thing for me.

7. My favorite medical T.V show is : Mystery Diagnoses - They have profiled TN and many other invisible illnesses.

8. A gadget I couldn't live without : I probably could live without my iPod, but I really hope I never have to. Sometimes music really helps me cope with the pain.

9. The hardest part about nights are: Not being able to sleep because of the pain. The house is silent, as it should be, and I never feel more alone than I do during the nights.

10. Each day I take between 14 and 26 pills, depending on my pain level.

11. Regarding Alternative treatments I : I have tried just about everything I can find. I have done acupuncture, chiropractic, meditation, vitamins, and herbal treatments - none have worked. I was even preparing to go to Germany for specialized treatment that is not available here in the US until the doctors there decided I was not a candidate for that particular treatment.

12. If I had to choose between invisible illness or visible illness I would choose : I would choose a visible illness. There is nothing worse than no one believing that you are ill!! I know it sounds bad, but if people could see that I was sick, they would probably understand a whole lot better.

13. Regarding work and career: I don't have either any longer. I once was a fairly successful Children's Photographer. Now the only pictures I take are of my own children, on days when I can stand my pain enough to do so. I miss working and I miss the babies and small children I use to get to photograph. I hold out hope that one day I will be able to resume my career.

14. People would be surprised to know: There are days they see me , or talk to me, that I am in so much pain I can barely stand to speak.

15. The hardest part to accept about my new reality has been: Beside the pain, it would have to be the problem eating. Most days I can only eat soup and maybe a little mashed potatoes because most of my TN pain centers in my mouth and teeth. Yes, it keeps me thin, but what I would not do for a pizza!

16. Something I never thought I could do with my illness that I have done : I have spoken to others about my illness. It is not easy to open up to a group of people after so many others around you have had trouble believing that you are in the type of pain you really suffer with.

17. The commercials about my illness : What commercials!? There are not any! At least none that I have seen, anyway. Trigeminal Neuralgia is such a little known illness most people, even some doctors, have not heard of it.

18. Something that I really miss doing since my illness that I used to do : I miss taking long, hot baths. I can no longer do so. My bathing must be as quick possible so that the change in my body temp. does not cause my pain to flare up. Everyday, when I bathe, I face the potential for pain.

19. It was really hard to give up: Long walks with my kids, playing in the snow with the boys, popcorn, chips, pizza, any food that is not soft and requires little to no chewing.

20. A new hobby I have taken up since my diagnoses is: I have started to blog, which I love. I have also begun to paint with water colors, which I am REALLY bad at!

21. If I could have a day of being normal again I would: Travel to Illinois to see my family. The TN makes traveling next to impossible for me.

22. My illness has taught me : I have learned that I can deal with a lot more pain that I would have ever thought that I could. It has also made me realize how much I really want to stick around and be here to see my kids grow up and have families of their own. No amount of pain is going to make me miss out on that. Maybe by the time they are grown there will be better medications, or a cure, for this dreaded thing!

23. Want to know a secret? Something people say that gets under my skin is: Maybe you have a bad tooth. Maybe you should go see the dentist. Those things make me crazy! I have been to dentist after dentist. I have had root canals that I never needed! I see a wonderful dentist 2 times a year for cleaning and check ups. There is not a thing that is wrong with ANY tooth in my mouth! The pain I feel in my teeth, gums and mouth is from the TN, not a bad tooth.

24. But I love it when people say: I have read about your condition so I can understand what TN sufferers are going through just a little bit better. Unfortunately, I don't hear this very often at all.

25. My favorite motto, scriptures, or quotes that get me through rough times : What doesn't kill us makes us stronger. Fear is fine as long as you face it. Being scared does not make you weak; it makes you human.

26. When someone is diagnosed I like to tell them : I tell them to hang on to their loved ones, they will sometimes be the only things getting them through really bad days.

27. Something that has surprised me about living with an invisible illness is : How far I have come since the day I was diagnosed. I can admit I did not have much hope for myself that day. Seriously, who wants to be told you have a condition that will cause you pain every day for the rest of you life. And by the way, there is no cure. Since my diagnoses, with the help of my family, and a few very good friends, who are willing to give me a kick in the pants when I need it and get me thinking straight, I do have hope. I have hope that some time soon TN will be a thing of the past.

28. The nicest thing someone has done for me when I was not feeling well was : To just sit with me quietly. My boys are amazing at doing this. They will often sit with me on rainy and humid days, when my pain is at it's worst, and will will watch movies. It is quiet, which I need when I am in so much pain, and they are with me which helps more than I can ever explain in words.

29. I am involved in Invisible Illness Week because : There is such a need to get the word out about ALL types of Invisible Illnesses! The men and women who suffer with invisible illnesses need understanding, compassion and medical care. In order to get these things people need to be educated about each Invisible Illness out there.

30. The fact that you read this list makes me feel : Hopeful. I feel that with every person who knows about Invisible Illnesses we are coming one step closer to cures for everyone.

If you have read this far I thank you from the bottom of my heart. I would like to encourage you to send the url to my blog to anyone you know suffering with an Invisible Illness, or anyone you think might like to read it and be a little more informed about Invisible Illnesses.

If you would like to become involved with Invisible Illness Week here is the information you need to do so :

Find out more about National Invisible Chronic Illness Week and the 5 -day free virtual conference with 20 speakers September 14- 18, 2009 at

If you are interested in blogging a post like this one please go to:

Thanks again for taking the time to read this - please help us spread the word bout Invisible Chronic Illnesses!


  1. Just stopping by to say hello, from your vocal point post. I will be praying for you and your illness.

  2. Hi,

    Just found out about invisible chronic illness week and think it's a great idea. My illness is, for the most part, undiagnosed, so it's great to feel part of a broader community of people who have invisible illness'. I can relate so much to what you wrote about even though my symtoms (more or less like chronic fatigue syndrome) are much different. Best wishes...