Quack.

I was diagnosed with JIA at 8- I didn’t receive any real treatment for it until I was 20 because my mother thought it was stupid. She felt it was an insult to her to say I had an autoimmune disorder because hers was fine. Instead she told me it was all in my head and refused me medical treatment. She found my new doctor when I turned 18 and she and my stepfather started golfing with him and befriending him all to convince him I was overly dramatic and just wanted attention. I only got any real treatment when I slipped into a coma for two days when I was 20 because a flare resulted in a fever so high my brain started to boil. Now I have dead of dying bones in my limbs and spine from vascular necrosis and spinal damage, damage to my spleen, stomach and heart. My mother still called me gimpy and encouraged my family to do so and ignore me until I was 25 and had moved across the country to avoid her meddling and find decent doctors. I went almost two years without seeing anyone and got off a plane at a family reunion in a wheelchair with a bag of prescription pill bottles bulging in my purse. They still didn’t take it seriously until my husband made a few phone calls. I don’t know what was said but nobody calls me gimpy anymore or cracks jokes.

I get tired of, “What do you mean you want to get pregnant? How do you expect to take care of baby when you can barely take care of yourself?” WTF!!! I spend my all of my time trying to keep balance and take care of myself. I’d like to see them attempt manage what I do. Not to mention – What the hell makes you think you’re such a perfect parent? From my mother I usually go with, “I know it would be hard, but I can do hard things and I will do what I have to do.” With strangers (I actually had a woman I had never met come up and start lecturing me as I was sitting in Tokyo Joe’s eating curry and reading information on pregnancy and some of my treatments) I’m closer to my above thoughts. “I’m so glad you’re a parenting and child development expert. I’d love to look at your credentials sometime. Oh, and it’s none of your damn business.” I’m not always great at dealing with people. After being diagnosed with fibromyalgia and rheumatoid arthritis at 12 and currently being 36 I’ve run out of patience. I try to work on it. That’s actually a fair amount more mild than what I would have said at 20. 🙂

Im 17, ive had: ‘you just need to pull your self together, its only you that can fix yourself, so just go out and do it’ Wow, i never realised i could cure my own autoimmune disease! Well, no need for the doctors, im just gonna be healthy today!

My fave came last week. If I’d learn this meditation technique that involves picturing a person from my past and my forgiving them, then my illness would go away. And really believing each time I say “I am getting better.” It’s all in my head, after all. I drew a deep breath, smiled and said, “I’m glad it works for you.” and changed the subject.

TOnight’s gold…if you just do nothing but post positive statuses on your facebook for a month you watch how your body will heal…really? Fudge! YOU found the cure thousands of scientists never knew.

I was diagnosed with nerve damage from a car accident as well as Fibromyalgia at 24. The accident happened at 18 and the Fibro has been there my entire life. I thought *everyone* ached 100% of the time. At 29 I still have some insensitive family and friends say variations of “you’re too young to have all these problems.” Well, no kidding! But I didn’t choose this. Who would?

MCTD. Mixed Connective Tissue Disease. Most commonly a combination of Lupus, Schleroderma and RA. I have signs and symptoms of all of them. Nodules in the hands, Raynauds and my left hand snaps closed and pops. I’m 33. I look like a little old man hobbling to the bathroom in the morning because of stiffness and pain. The best thing about MCTD is it can include any auto immune disease. It’s like the mad lib of immunity disorders. Today I may have 3 but next week I may take on qualities of another. It may or may not be a precursor to a single disease, like my body can’t really decide what it really wants out of a chronic illness. It can stick around for a while or play russion “flare” roulette with good days/bad days. The only person who has successfully lightened my outlook and not dictated what I’m doing right and wrong with my condition (seriously, I’ve been told to use essential oils by his mother and that they will work, while calming and pretty smelling, it’s not any more of a cure then nyquil), is my fiance, who thinks it’s absolutely hilarious that I have something commonly dubbed as “dead hand disease”. I’m informed each morning on how much of and what part of my body twitched, from peripheral neuropathy, as I slept (if I do sleep) and that sometimes it can be better than late night TV. At the same time he makes light of my issues he also helps with my shortcomings and is supportive, non judgmental. I know my chances improve with laughter, love and caring that someone like that provides and so far is the best treatment that hasn’t been forced on me as something I should or shouldn’t be doing.

I have hemiplegic migraines, and I am constantly getting people giving advice. My favourites have been “Maybe your pain meds are making it worse because I read…” and “I think you should eliminate stress from you life, like, completely.” Yeah, I’ll get right on those things. You learn to ignore people, but every once in a while you get something that irks.

I think I received very similar advice (fibromyalgia) from my boss when I started having my constant headache and neck pain at work. She told me multiple times if I’d just get back to work I’d get in the swing of things my body would fall in line. I’ve been told not to take my pain meds and take some ibprofin instead (ha). I was told by my sister that she knows someone with fibro who has two kids and works full time so I should be just fine and wasnt I too young to be signing my life off to this illness and that she got in a car accident too and her neck was never the same she just had to deal with it…..It was very hard because I went from being an active and social person with a great job to being house bound almost a month after the car accident that has caused all this trouble for me and I did not have a diagnosis for almost 3 months. People did not understand, so at first there was nothing to say to help them. But I feel that if I can share this with people maybe they can understand a little better.

I suffer from systemic scleroderma, which has tightened the skin on my arms, legs and portions of my face. I have been told on a few occasions, “Well, at least you’ll never have to worry about wrinkles!”

Yes, that’s right. I’ll also never have to worry about being able to sit with my legs crossed or to kneel down or squat, because the skin on my legs is so tight that I can’t manage any of those positions gracefully or successfully! And I’m sure happy that my face is so unlined; after all, scleroderma is so much less expensive than plastic surgery!

I’d curl up my fists and whack people a good one when they make the “no wrinkles” comment, but I can’t. The skin on my fingers is so tight that the closest I can come to making a fist looks suspiciously like I’m forming the letter “O.” (Just picture a middle-aged woman beating someone with her hands shaped into tight little O shapes.)

OK, so this (most of it, anyway) is tongue-in-cheek. But I’d sure give anything to be disease free and wrinkled instead of chronically ill with a body that feels like a stuffed sausage.

William, Stephanie is one of my closest spoonie friends and I can promise you that she is friendly, witty, sarcastic snarky, beautiful, wonderful, warm and amazing. Do you think someone that is angry at herself or even her disease would inspire such admiration in an Internet friend? I doubt it. And actually she probably is angry with her disease, diseases actually since she has five that I know of, but who among us can say that they are completely happy with having a disease ravage their body? But as Steph said, she takes it in stride, she tries to shake it off to the point of her own detriment, and she has pity parties every once in a while but they last about five minutes and then she’s back to telling jokes and having twitter TV parties. She’s introduced me to a bunch of other positive, great spoonies that have enhanced my life immensely. If you go on twitter or Facebook and ask any of her friends, and they’ll tell you the same thing.

And as for the specific things that were “suggested”, I’m not exactly sure how they are harmful, selfish, spiteful or arrogant. They are things that most people do every day, and most are advocate by doctors in certain circumstances. So unless you look at all the aspects of something, maybe you should think before you speak. If you would like to discuss it with me further, you can find me on twitter with Steph by the same name shown here. Feel free to look me up.

A potent sign of caring is knowing when to STFU and MYOB, then having the consideration to do so. You (and presumably just about anybody else with a diagnosed auto-immune disorder) are under a doctor’s care. You are a grown-up. You are therefore capable of making responsible decisions on what you need to get you through the day, and it’s nobody’s business to whip your mug of coffee out of your hand or critique your health regimen.

Kudos to you for retaining a sense of humor about it.

I love it when people also tell you that you are too young to be feeling sick all the time…like it is a choice!! I am 31 and people say to me, “You are too young to have all those problems” and “Don’t you ever get tired of being sick all the time?” Well, duh! No, I like feeling tired and achy all the time! I have also heard, in reference to my depression…”What do you have to be depressed about?” I try to explain brain chemicals and that it is not just sadness that can be cured by an ice cream cone, but it is like talking to a brick wall. I also get tired of the “you are always sick” and “you never feel well”. Thanks! I know! People can be so stupid sometimes…quack!!! Thanks for this site…at least I know I am not alone! 🙂