30 Things About My Invisible Illness You May Not Know

I first filled out this questionnaire as part of a therapy session a few years ago. I wish I could locate it to compare the answers.

I decided to fill it out again this year and make it public. I thought it might give you a little insight into me!

1. The illness I live with is:

My usual answer is fibromyalgia, major depression and anxiety. However, I also have irritable bowel syndrome (IBS), obsessive-compulsive personality disorder (OCPD), borderline personality disorder (BPD), polycystic ovary syndrome (PCOS) and endometriosis. I have a thyroid condition, mitral valve leaks in my heart, migraines, have had two partial pneumothoraces. I am also very lactose and MSG intolerant.

2. I was diagnosed with it in the year:

Every year? Always a comorbid condition with fibromyalgia.

I was officially diagnosed with depression in fifth grade at the Children’s Hospital, with major depression episodes throughout my teens and adulthood. I was last diagnosed with antidepressant-resistant major depression and anxiety in 2009. My fibromyalgia diagnosis was first discussed in 2011 with treatments starting in 2012 and an official diagnosis after seeing multiple specialists in 2015.

3. I’ve had symptoms since:

My entire life! I have 40 years of unanswered questions, 40 years of never “feeling well.”

Different complaints over the years I now see in hindsight, backed up the fibromyalgia diagnosis. With the depression, I don’t know what it’s like not to have it. The severe anxiety wasn’t until 2009 and it sucks.

4. The biggest adjustment I’ve had to make is:

Making room for all my pajamas and comfy clothes.

Seriously, not being capable of working has been a huge adjustment. It means not having any financial independence. There is daily structure, interaction with others and comfort when working I miss most days.

5. Most people assume:

Who cares? If they can’t support me, they don’t matter!

I don’t know what most people assume. I know I am unreliable. Not knowing how I will feel in the future is a coin toss. No matter how much I want to do something, I have no way to know if I will be able to that day, leading to cancelled plans and hurt feelings.

6. The hardest part about mornings is:

Waking up when you never want to!

Some mornings I wish I had never woken up again. It can take me an hour to slowly loosen up, give my body a chance to ease out of the nighttime pain. And if my body is cooperating, my head may not.

7. My favorite medical TV show is:

I don’t watch a lot of TV. It’s boring!

Used to love “House,” these days I like the Chicago ER one. They mix with the police and fire department.

8. A gadget I couldn’t live without:

My laptop! It keeps me connected to the world. I can read news, communicate with others, educate myself, distract myself from the pain and online support groups!

9. The hardest part about nights is:

Sleeping!

Knowing no matter how much sleep I get, I am going to be exhausted. Knowing I have to wake up to another day like this causes anxiety. My nausea is the worst in the evenings.

10. Each day I take __ pills and vitamins.

A handful! Something for my depression, something for anxiety, something for fibromyalgia, something to help me sleep, something for my thyroid. Medications seem to always be a work in progress.

11. Alternative treatments?

I use medical marijuana (legally).

I have tried massage, physio, chiropractor, prolotherapy, counseling, diet changes and lifestyle changes to name a few. I want to try “floating” next.

12. If I had to choose between an invisible illness or visible I would choose:

My illness isn’t invisible, I am.

I got to experience the “visible” vs. “invisible” in the last year. I broke my ankle and was in a cast for 10 weeks. People were nosy and asked how I broke it, but I was also “seen.” I noticed more doors being opened, sales clerks offering assistance without having to ask and generally more smiles and chit chat. In comparison, without the cast, (although I do sometimes need a cane). People don’t hold doors, they don’t offer assistance or smile. In fact, when I park in a handicap spot (legally), I wait for the comments.

13. Work and career?

I never had a career, I had jobs.

I ever had the education for a career. But I loved retail management. I spent five years as a receptionist for a company that refused to try and accommodate my mental health issues. Instead, they fired me on January 1, 2010.

14. People would be surprised to know:

I have no friends.

How alone you can feel, even in a room full of friends or family! I won’t ask for help most of the time, so if I do, I really need it.

15. The hardest thing to accept about my new reality has been:

That it didn’t come with superpowers!

That it controls me, not the other way around. It is hard to battle your body and your mind when they seem to want to scream at each other instead.

16. Something I never thought I could do with my illness that I did was:

Spend the last few weeks of my dad’s life with him, supporting and helping care for him. I didn’t think I was strong enough, even while doing it. I still don’t and he’s gone!

17. The commercials about my illness are:

People watch commercials?

I have no idea but “mental health” seems to be trending right now…

18. It was really hard to have to give up:

That the life and future I envisioned for myself is impossible. This wasn’t in my “life plan.” I didn’t make a “back up” plan.

19. A new hobby I have taken up since my diagnosis:

Annoying my hubby with my forgetfulness.

Nothing I can think of. When my body feels ready to tackle something new, my brain says “nope” or vice versa.

20. I could have one day of feeling “normal” again I would:

What’s normal?

I would knock off a few fun “bucket list” things.

21. My illness has taught me:

It is my personal fight I have with myself on a daily basis. My illness is my problem.

22. What’s your secret?

Just because I am smiling and seem fine, doesn’t mean I am. I am battling my own mind and body to be present, engaged and involved. I may need to excuse myself from a crowd, don’t know how long I will be able to stay for and don’t know if I will have it in me to explain why I left.

23. One thing people say that gets under my skin is:

“But you don’t look sick.”

Or

“Have you tried ______?” from a non-medically educated person. Just because your neighbors, granddaughters, babysitters, moms, sisters and friends “cure” themselves with ______, doesn’t make it a cure or even safe!

24. I love it when people:

Remember me!

Include me, even if I can’t be involved. It hurts to hear about the fun after it’s over. Who knows, I might have been having a good day. At worse, you end up having the same experience you are now and feelings aren’t hurt.

25. My favorite motto, scripture, quote that gets me through tough times is:

“Not today.”

I use it all the time! “Not today” can be a mood or it lets me know it is OK to put myself first. It lets me put “feelings aside” for the moment because it isn’t the time to address it. That it’s OK to say “no.”

26. When someone is diagnosed I’d like to tell them:

Be patient, it takes time to adjust to a new you, a new life, a new reality. Have patience with those around you, they are learning too. It is also OK to remove those “toxic” people who drag you down.

27. Something surprising about living with an illness is:

My sense of “time” is out of order. I may feel like I just saw you when in reality, it might have been three or four months ago. I didn’t know!

28. The nicest thing someone did for me when I wasn’t feeling well was:

Left me the hell alone!

The simple things are the most appreciated and they doesn’t cost a thing. Clean the kitchen or bathroom, wash and clean my car, vacuum, take my dogs for a walk or do poop patrol, run a load of laundry. They understanding I don’t have it in me and do it without being asked because I probably won’t ask!

29. I’m involved with Invisible Illness Week because:

I want to stop self-shaming myself and I want people to treat others with more respect, regardless if you can “see” the disability. I am willing to stand and say “I have a mental illness and fibromyalgia and it’s OK!”

30. The fact that you read this list makes me feel:

Thankful.

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock