Today is a bad Lupus day! I came upon your web site through a friend in my lupus group and am so grateful! You put it all together! Thank you! I am shaking on the inside and can’t control it. The weather is against me and everything hurts right down to my toes. I’m always positive and today I can’t just seem to grab the bootstraps to get up! I read this and said get going handle your life, take some meds, lie down and you will get better! I want to live! Stop obessing and focus..focus for all those that have an auto-imune disease and stand tall…WE WILL MAKE IT NO MATTER WHAT!

great post! really liked it!

This made me weep with pain and joy. To hear someone say so very clearly and beautifully what I feel everyday but can’t express was amazing. I have cf, diabetes and asthma and have major trouble with fatigue and it was like you are describing my life! Pretending everything is fine, acting a part. Feels so good to know other people feel this way too, I feel less alone than I have in ages. Thank you so much

This is my partial life as well…I try really hard to look and act like there is nothing wrong in my life. My health issues started in my early 20’s right after my son was born. I am finding it really hard to put all my thoughts and feelings into words. Reading your story made me so emotional, as it totally hit home for me as well. Most of my life has been quite the performance!

Well, I could not have imagined that there are so many people that I have something in common with; severe OA spine, ankles, knees and now I am struggling with my hands. I have granddaughters that are young and I have so much to teach them yet. God just please give me a little more time… I also suffer with FM and dystonia. I always look so good, the best dressed but I cannot tolerate the heat of summer I wilt quickly so I decline invitations, maybe it’s all the meds. Yup I have not slept in 3 days for more than 4 hours at a clip. Many nights I don’t sleep at all. I can’t drive and cannot tolerate long car trips so I don’t get too many places by myself. I would love a nice stroll through the market, anywhere. I am a browser by nature but I can’t keep the others waiting. Oh the doctors. I have a GP, neurosurgeon, orthopedic, foot and ankle (sports med), pain management (specialist), oh and you think I should add another to the pile, this one knows better than all the others. I hear it all the time. I once went to a rheumatologist and he told me that we both know the ropes and there was nothing he could do to stop the progression of the osteoarthritis, he would sent me to the specialists when needed anyways. He would not take me on he said I was smart enough to know when to go to a specialist myself and there was only PT and meds to try to make me more comfortable. He was a big time specialist highly recommended to me.
So we are all in the same sinking boat. The last MRI at my GP’s the nurse called and said, once again, it’s only “ole arthur” and I said “excuse me?” She said “you know arthritis” and I let loose with ” I am 54 years old this started when I was 48. I have had 3 back surgeries and am facing a possible neck surgery! I have had bilateral elbow surgeries and 2 bilateral carpal tunnel surgeries because he thought that might help! I am undergoing injections in my knees! This is not just “ole arthur” and don’t ever use that term with me again!” She was sorry and said so and is very careful with me these days, she must have a note on my charts.
I thank God every day for my daughter, she is a saint and God sent. My grand children keep me going I would be lost without them. We must try to focus on the good, there has to be something good somewhere to focus on.

How come it is only women that respond? Is it because we’re the most likely to get these diseases? Why is that? Is it because men just don’t go for this type of stuff? Demonstrative affirmations of our weaknesses?

Hurting today. Fortunately I have a job I can do from my laptop. My bosses don’t understand why most weeks I can’t put in even part time hours when I don’t even have to get out of bed to do it. Well… when you’re only awake 6 hours a day…

I haven’t bathed in I don’t know how long. I don’t have the strength to stand in the shower and I can’t find enough time to sit in a tub and then I’ll be so cold for so many hours (thanks Raynaud’s).

Sigh,
Ali

Christine —

I wish I could give you a big hug and say thank you, from the bottom of my heart. Your words express many of the same sentiments I’ve tried so hard to convey to people who just don’t understand.

No, I don’t have Lupus. I have Porphyria, and I live in a desert, surrounded by sun and stress. And I know what it’s like to have people judge you based on how you look, rather than understanding how you actually feel.

I went 20 years without a diagnosis, so I learned a very long time ago how to wear that mask that covers over how badly (and how often) I’m in severe pain. I couldn’t agree more with you about being tired of and hating having to wear masks, having to defend myself in front of people who don’t understand why I just can’t do whatever they want me to, when they want me to. Who don’t understand how carefully I have to plan my day based on the energy I do have, and how terrified I am of having an attack.

So I just want to say thank you… Thank you for sharing your story.

Perhaps because I came to a state of disability later in life, and was quite active and able for most of it, I have a very different take in my disability. I have fibromyalgia with its attendant chronic pain, fog and exhaustion. I also have spinal injuries from a long martial arts career, amplified by osteoporosis. I don’t remember the last time I wasn’t in pain to one degree or another, mostly in the moderate t severe range. I do work, though with many adaptations and a limited schedule. But rather than a burden, I see my disability and pain as a gift, one that allows me to look at others with eyes of compassion and love. I never ever have the dubious luxury of taking good health and a pain-free life for granted. Because I was not always disabled I understand why others are oblivious to my challenges. Furthermore I am glad of this, because it means their bodies are not suffering. It is not their responsibility to understand me and my life, it is mine. No one is obligated to empathize with me or to ‘feel my pain’. I wouldn’t wish this on anyone (okay, almost anyone; I DO have my moments!), though I admit I do sometimes wish that for just a day or two, some people could feel the way I do, just for the sake of perspective. So rather than hang out with people who can run about and not pay dearly later, I have collected a wonderful circle of friends who have much the same issues as I do. This helps to balance the times such as being at work when I can’t avoid people who just don’t understand. After all, I already have constant pain that I don’t have a choice about. But I CAN choose whether or not to take personally other’s insensitivity and judgment. It is not always easy, and I certainly don’t do it perfectly, but knowing I have a choice about how I look at things and what I believe about them empowers me in so many ways. I highly recommend The Work of Byron Katie. This method has freed up tons of energy that I used to waste on the belief “They should understand me”. Awesome stuff, I encourage everyone to check it out!

Thanks a million for writing this… I agree that when people ask how are you? my answer would take up the rest of their day! I’ve had Systemic Lupus and Firbromyalgia for 28 yrs. and I should get the Academy Award! The awful fatigue and foggy feeling is hard to explain to everyone. Most people say, “I’m tired too!” They just don’t get it… I tend to only call my friends who are sick because they truly understand. I’m tired of spending so much time alone when my other friends are at the movies or out to dinner.
Whenever I start feeling “human” for a day or two it’s like a tease for me, and then BAM! pain all over and barely moving.
Thanks again.. I would hug all of you, but I don’t want to cause you anymore pain..

Christine,

Its as if you wrote this for me right down to the wizard. I can’t believe another sole is out there dealing with the same hell I do everyday. I was diagnosed with FM, DDD, spinal stenois and several other things after a fall at work. I was finally approved for disability last year when I turned 50. Divorced and raising two kids I have decided its not worth looking for ‘Mr. Right’ I just don’t have it in me and don’t feel its right to bring someone into my nightmare. Good to know I’m not the only one wearing two faces. Thank You so much for sharing your story. Gentle Hugs, Kim B

Christine, thank you. You said it better than I ever could. I am getting the Spanish Inquisition from my family on my decision not to return to work. How can I return to work when I am getting so little sleep and in so much pain? It is the hardest decision of my life because I have never not had a job. I don’t know what to do. I had to be hospitalized after my last visit with my parents and my sister, all because they don’t understand. They think I am lazy.

I am so sorry you are going through this. Life is damn hard and it is unfair. I wish I could make everyone better. Just one use of Harry Potter’s wand. Just one and I would heal us all. There are people that care about you and people whom you don’t have to act with. Sadly, we are on the other side of a computer screen.

Take care and thank you for so eloquently explaining what it is like.

When I was still well enough to work I used get people ask me if I was alright when I didn’t wear make-up. When I had make-up on I didn’t get any of those comments. I actually have stopped wearing most of my make-up to doctors appoinments because it masks symtoms so well. As for spray tans, I’ve learned to embrace my paleness. And let’s face it, it’s not like I’m going anywhere….

Great writing, always good to know you’re not the only one!

take care, ness
(ME, controlled Haemachromatosis, fibro)

I am so glad I came accross your article…It truly explains how my way of life is as well..I have full body RSD and I am in considerable pain,most days. I try to hide the pain around my friends and family but there are some days that they can see the pain in ny face…My biggest problem is when a friend tries to get me out of the house and invites me to a luncheon or get together with other people, and I act through the entire evening, only to have the other guests say to me….What is it you have? You seem so healthy to me and you look great. I feel like they think I’m actually faking an unbelievably painful disease…Sometimes it is the same person over and over at each event that says the same thing… You look too good to be sick…What is it you have again? never heard of it!!!! I then go home and hide under my covers for another few months til I brave the elements again, only to have the same experience..I think I must be crazy to sit there in pain and pretend that I feel great for people who are truly ignorant to this disease…I do it because I want some kind of life outside my bedroom….I’m in pain 24/7,…it’s just the level of pain and swelling that may differ…
I Thank God for my wonderful husband that is there for me every day, I truly wouldn’t make it, if it wasn’t for his kindness and compassion.
I wish all of you some painfree days,soft hugs to all of you.

Kim

Thank you. Many times over!! I felt your words were talking to my inner me- you brought me to tears –

Kristin
MCTD –
Lupus ,arthritis, celiac, perhifial neuropathy and much more they keep adding.

Thank you for this article, Christine. I hope you’ll continue to be just you, which is just fine.

I identify with a great deal of your statements made here, so I guess I get to join the secret club too. Looks like I’ll be in good company.

I’m grateful to you for being able to speak so clearly and descriptively about what trying to live with chronic illness is like. (Fibro here.)

Here’s praying for your comfort and peace.

Suzanne Reed
Nashville, TN

I couldn’t stop nodding my head reading this! It seemed to be describing me! You keep hitting the nail on the head. And still people will not get it. Here, the “spoonies” understand. And we thank you for your writing because it helps to know WE are not alone.

I am on the other side, member of the healthy group, reading how you feel amazed me because I read /heard/lived it all before. It’s so much the same of what I got from my most precious friend that has MS. It is so hard to look the other way when she is “bad”because I so want her to be “good” I pray for myself to have the patient and wisdom to relate to her and treat her without offending and hurting her because god only knows, that is never my intention.
Thank you Chistine for sharing what you feel and think and putting it down so clearly and simply, I now feel I gained more understanding which will help me better interact with my precious love, I will be an even better angel to her, I promise.

What a brutal but accurate account of living with chronic illness. Hats off to you Christine for writing this article. I have Fibromyalgia, Chronic Fatigue Syndrome, migraines, severe depression (go figure), and spinal disease and can really relate to you. Have you ever considered starting an on-line support group for people like us ?

“so I don’t let them in.”
Ditto!
No one gets it and it’s too exhausting to explain, justify or quantify.

I also hate spending eight hours composing a letter to the escalation dept of the health insurance co to fight a claim denial.

I don’t tell family the ugly details but I gotta explain, justify and quantify to strangers?!

Thanks for nailing it on the head

I read your article and recognised me straight away. It’s so nice to know that I’m not the only one in this “secret club”. Thank you for writing this and hopefully “well” people will read this and give us some understanding and support.

It’s so nice to read this and know that I’m not the only one. No one really knows how much pain I’m in most days because I don’t let it show – I don’t want to let it show. Thank you for writing what I was thinking.

I couldn’t have said this any better. I’ve struggled with FMS & CFS & other stuff for so long I really don’t remember when I felt well or wasn’t in pain. I also hate having to put on the show face so others don’t have to put up with my illness. But there are days when they can see the pain written on my face. They know I’m ill now because I am no longer silent about what Fibro, etc people go through. I have too many friends with this same illness not to speak out. I lived for years in silent misery but though I may still be silent about how my misery & struggles are, I am no longer silent in how it effects us on a day or moment-to-moment basis. The world needs educating on how to treat those with invisible, chronic illnesses. We shouldn’t fear how we are perceived, it is only through educating the masses on this can they be more supporting and understanding. Tender hugs to you all and thanks for the article, Christine!

OMG….. I love this so much. Beautifully written by someone who knows what I’ve lived for 24 years. I am so mad that I have to say I’m sorry to my 3 daughters constantly. I taught them compassion. I don’t know what lesson I missed. I guess I need a big horn protruding from my forehead to prove I’m sick. I would like to know from any of you out there how do you handle the comment “It’s all about you”. Sorry, but I’m in here and at last count no one has came to help me do anything in my home or caring for my 86 year old mother who is non-ambulatory in a wheelchair. Disability has turned me down, I am 50 and too young for Medicare but can not work because of pain and cognitive impairment. I have a lawyer, still no disability after a judge says I can put widgets in a box for Work. I am a Certified Professional Coder by trade, if I transpose numbers (which I do) I am no good to any medical facility. The only thing I have is a husband who is so supportive of me. Without him, I believe I would die. Thank You for expressing your feelings. I’m getting ready to fight back.

As soon as I started to read this article I said to myself-“My God-this is me, & my “life”….it’s sad that we are part of “secret club” that we never wanted to be part of-the article & all the comments did make me feel comfort-THAT I AM NOT ALONE IN THIS “club” & there are others out there just like me:)
Happy,healthy New Year to all “my fellow club members”!!

I do look sick, most of the time. And yet, the state of my health is ivisible.

Making long-term appointments is a challenge, as you never know how you will feel the next hour, let alone days or even weeks in advance.

Having to cancel a social appointment because getting out of bed that morning is all you’re able to manage that day.
How do you explain?

I put on my mask most of the time. Go well over my limits, because it’s just impossible to explain you don’t want to be a wet blanket.

Even for my lifelong friend, I put on my mask.
She tries. She hounestly tries to understand.
But what is there to understand if you see your friend running around one moment and collapse the next?

How do you explain that it is not the pain that’s stopping you, but the fatigue, that settles like a lead blanket over your whole being?

After seven years of major healthproblems, I finally decided to show my friend, what life is really like for me these days.

I didn’t cancel my personal care, only to discover that my friend considers it a waste of time, for my carers to care for my emotional health as well as for my bodily health.

Her vision is that in these times, where care is short, a carer can care for another one in need of care, in the time they spend to talk to me and treat me as a human being, rather than just a patient.

I can see her point. So many of us and so little staff to go around.

How can you explain that you actually need to be treated as a human being in need of care, rather then a patient, to who care is applied.

How to explain that you can cope with your pain fine one day and not the next.
How can you explain that you are aware that the pain isn’t worse than normal, you just are less able to cope with it, because of the draining fatigue.

How to explain that your scootmobile is a Godsend and that you don’t mind waiting a minitue for mobile people to pass, so you can conitnue on your way.

That a minute longer in the shop is not important.

Important is that you are able to go to the shop independently.

How to explain to a medical team that you want to write down what’s being said, because your foggy brain can’t take it all in?

How to explain your own daily battle with what’s possible and what isn’t, but still needs to be done?

The choices you daily make on what and with whom you spend your limited energy on?

Please be patient with us who are a patient.
Realise where the word patient comes from.
And realise that we don’t see ourselves as a patient, but as a human being, just like you.