I filled out one of these for The D, too. But you all know exactly what that is about! So here’s one I did for my major other “Plus”…fibromyalgia:
30 Things About My Invisible Illness You May Not Know #1
The illness I live with is: Fibromyalgia
I was diagnosed with it in the year: 1996
But I had symptoms since: About 1992
The biggest adjustment I’ve had to make is: Giving up my Life’s work. Rest. Diet.
Most people assume: I’m fine.
The hardest part about mornings are: Getting out of bed.
My favorite medical TV show is: Hawthorne, RN
A gadget I couldn’t live without is: I hate gadgets, but do make good use of my computer.
The hardest part about nights are: Not resting well; no deep sleep.
Each day I take12 vitamins and supplements only.
Regarding alternative treatments I: Have found many very helpful, like acupuncture, massage, reflexology, herbs.
If I had to choose between an invisible illness or visible I would choose: An unenlightened question. Being ill is bad, period.
Regarding working and career: Professional dancer for 40 years. Had to give it up.
People would be surprised to know: For me, now, it’s not the pain, it’s the fatigue and depression, occasional shakeys and cognitive problems processing input.
The hardest thing to accept about my new reality has been: The death of my old life.
Something I never thought I could do with my illness that I did was: Live.
The commercials about my illness: Are idiotic and destructively manipulative.
Something I really miss doing since I was diagnosed is: Choreographing new dances.
It was really hard to have to give up: Dancing, teaching, choreographing.
A new hobby I have taken up since my diagnosis is: Gardening.
If I could have one day of feeling normal again I would: After so many years, I cannot even imagine.
My illness has taught me: The amazing depths of sorrow.
Want to know a secret? One thing people say that gets under my skin is: Just do it.
But I love it when people: Have learned to pace our outings.
My favorite motto, scripture, quote that gets me through tough times is: The Bach Brandenburg Concertos; Springsteen’s Seeger Sessions.
When someone is diagnosed I’d like to tell them: Grieve deeply and well for your old life. And then get on with it: Question conventional wisdom and pay attention to your body. Eat low-carb with moderate fat and find meat substitutes for some of your protein. Rest often. Exercise in many small amounts throughout the day instead of all at once.
Something that has surprised me about living with an illness is: How it enrages me.
The nicest thing someone did for me when I wasn’t feeling well was: Take over cooking.
I’m involved with Invisible Illness Week because: Education about the realities needs to happen.
The fact that you read this list makes me feel: Curious.
Thanks Judith…I empathize!
Have have other friends with fibro, in this area; and help at their support group, though that may come to an end, as I feel I simply have too much on my plate.
Do asthma and migraines (aside from diabetes) count as invisible illnesses. There’s also Raynaud. I get that too…“you look great”…when I’m feeling like crap and I’m thinking…do they need glasses, or what??? But I just answer “Thanks”, all the while trying to sound like I mean it!
How are YOU feeling dear Judith?
My disability has NOTHING to do with my diabetes, nor does my diabetes have anything to do with my disability. My disability is an emotional one, but people do expect that it’s the diabetes that makes it impossible for me to work, or teach.
How incredibly silly. If we had a hand, leg, eye, missing, of course there is a disability, but because they can’t see it we must
be lying or on the take.
It makes me very angry that people think this way.
The disability that I live with: Borderline Personality Disorder/ PTSD/ Chronic, Severe, Forever Depression
You can’t see any of them as you would freckles.
I have been in therapy for over 15 years working on these.
I don’t truly understand any of them either, except that they have taken away some of the most important things in my life, teaching, my children’s growing up years, and happiness that should have all been a part of my life.
With BPD, it is like looking through the bottom of a coke bottle…you see things one way, and I see them a little past the center.
I am afraid of relationships, which makes life a little lonely.
I am still filled with wisdom, caring, compassion, and intelligence. I am not stupid.
You never really are “cured” of BPD.
You learn to live with the effects of BPD
PTSD is finally being treated as a complication of abuse and thus accepted by people who work with those who are affected.
PTSD usually occurs within 6 months or the trauma, mine was years afterwards, which means that I had years of memories that were scarred and torn from me.
There are very few therapists who can successfully work with PTSD/BPD patients. The kinds of work that you would do with PTSD and the kinds of things you would cover in BPD…are entirely different and contra-indicated from one to another.
Depression is a disease, many more people have it than don’t
It can’t always be “cured” by taking a pill or getting over it.
Talk therapy can work wonders, but it’s not the only way to work through it.
Sometimes depression is more than just sadness.
I have considered suicide on many occassions and was a self-abuser for many years.
Considering suicide is completely different than trying it
I am depressed more days than I am happy.
I hate my abusers and would rather see them dead than alive, but I’m not going to be making that choice.
Diabetes (unseen) and these maladies (unseen) walk the journey of life with me, without being seen or known.
I’m glad that you’ve found a place where you can say it like it is Cathy, without fearing and/or expecting retribution, or an ignorant remark. I don’t know much about most of the disorders you speak of…but that’s more the reason for me to spend more time hearing you out, and less time for me voicing my opinion on what I don’t know. That said, your comments have urged me to go deeper, and seek out more info on each of these.
Migraines were once viewed this way by most…as was fibromyalgia, and hypoglycemia.
luv…linda
I totally agree with everything you said above. I have fibromyalgia. And letting go of my old life, being able to do what I wanted to when I wanted to, oh how I miss that!! It has been 12 years now since I was diagnosed and I still have days when I miss being able to heck just clean the house all in one day, to vacum, to go on hikes, etc. Sorrow does come along with this, for me it’s because you lose so much of yourself. There’s the before FM me and the after FM me. It’s like being a whole other person. At least body wise. But having this along with the diabetes has made me take better care of myself. I count my blessings every day, even the days when I can’t get out of bed.
I can’t tell you how much this site has helped me over just the few days I’ve been here. As supportive as people tried to be they just couldn’t understand everything that has decided to happen to my body. But now I see others who can actually empathize with me and I with them. A lot of times the only thing that might show is that I’m slower than usual if my arthritis is acting up, or a migraine has decided to hit me mid day. I like the idea of this what you might not know list.
I have a Handicapped sticker for my car as I am unable to walk and carry anything at the same time… I also have trouble walking and talking at the same time but they don’t have stickers for that As my various ailments are not all that visible other than a wrist brace (so I can use a cane) and sometimes a neck brace (if I can stand the heat!), I still get the odd g l a r e from people wanting to know why I’ve parked in a handicapped zone. Of course, it’s none of their business, so I don’t really have too much trouble glaring back, but I do have a favourite line I’ve used from time to time that pretty much stops people in their nosey little tracks.
I just tell them I’m legally blind!
It takes a minute for the realization that I’m driving a car to get to the same lame brain that asked me the stupid question in the first place, but once there… the jaw drop is well worth the effort! Good thing I’m not too blind to catch the reaction!
And there are days I would LOVE to write up a sheet of paper to give to people who can’t see my arthritis or my emotional problems and give it to them. Especially those who think I should be doing something more than I am able to do. Not that I don’t want to, I’d love to be able to work FT, but my body says NO…what am I supposed to do about it?
I know whatyou mean about the glares when you park in a handicapped zone. I get them too. I have fibromyalgia, unless, I am limping from the pain or look like death warmed over, from the pain and no sleep, you can’t tell that anything is wrong with me. I just might use your line, that I am legally blind, the next time it happens, if you don’t mind?!!! People can be so rude at times, and I do glare back!
Mind? Heck no! But I wouldn’t want you to land in any trouble. My smart mouth does that at times. Ideally you should have a BIG dog with you as your guide/protector next time you get the HPG (handicapped parking glare).
OTOH, I have seen my husband watch a perfectly ‘sound’ man drive into a handicapped zone with no sticker and pretty much dancing out of the car. Dave will walk up to him and say “Here, let me help you with your wheelchair!” Then the guy usually says something like “Oh, is this a handicapped spot?” … like he was… blind, or something. But I think people should leave those spots for the folks what need them… ditto the washroom stalls. If I don’t have to carry anything, I can still walk to a regular parking spot and leave the special ones for the people trying to negotiate the snow with a wheelchair or crutches.
BTW - Dave would never approach a lady with that ‘wheelchair’ line. It might look like some kind of attack when a big guy walks up to a woman in a car. And we should remember that most people capable of operating a motor vehicle are more than capable of managing their own needs (like a wheelchair) in a parking lot, so he is really just trying to embarrass the ‘cheater’. … and save him a hefty fine!
Common sense and consideration - not all that common or considerable.
I’m thinking the summer holiday is almost over and traffic is about to pick up in a big way for the next 4 months. I’m one of those irritating people who shops really early for that holiday in December we had best not mention yet. I just can’t handle the crowds and the parking lots! Yay Ebay!
So head up Dee - shoulders back - face forward … you are a child of the universe blahblahblah. You have every right to park when you need to park and nobody has the right to say otherwise. (Careful you don’t throw your neck out trying to straighten up your shoulders
Well, Bikette, I also have a smar mouth that gets me in trouble. So I am use to it. If I am having a good day I don’t even use the handcapped parking.I leave it for some one who made need more than I do. I am also one of those irritating people who shop early for Christmas,lol, I am almost done. I do not like the crowds either.I LOVE online shopping!!! ouch, my neck hurts LOL!!!
As my various ailments are not all that visible other than a wrist brace (so I can use a cane) and sometimes a neck brace (if I can stand the heat!), I still get the odd g l a r e from people wanting to know why I’ve parked in a handicapped zone. Of course, it’s none of their business, so I don’t really have too much trouble glaring back, but I do have a favourite line I’ve used from time to time that pretty much stops people in their nosey little tracks.