So happy for your wife that she has you supporting her! My thanks to you, on her behalf.

Hi Christine. I found your website yesterday. I have Lupus SLE, Raynauds Phenomonem, endometriosis, and recently had a hysterectomy due to cervical cancer . I was diagnosed with lupus when I was 27 years old and I am now 43. . Your wonderful spirit and attitude touched me tremendously, and I related to so many things on your 30 Things list. Thank you for giving me inspiration and hope that I haven’t felt in a long time. It’s a tough, sometimes lonely journey. I have definately found out who my true friends are through the years.

Thank you so much. I’ve been feeling extremely alone in my fibromyalgia, and today I was talking to my best friends that that made every thing 30x worse. First she called me and complained for 30 minutes about a friend cancellimg on her, and then asked me finally about my doctors appointment. I told her the final diagnosis of the fibromyalgia, and I began explaining it, she out me on pause to text someone else and change the subject back onto her. Later I tried bringing it up again after she asked whether or not I would be at school and I told her I would give her the handout of fibromyalgia. She said why would I want that and I said so you can know more about it and she said but I don’t have your weird sickness. This was extremely hard for me to hear, as well as insulting because out of all the people, I expected her to understand. I have always listened to her on the past, and she has never been there for me when it comes to sicknesses. I just dropped the subject but gave her a little bit of the cold shoulder on FaceTime to try to let her know it not okay for her to do that, and she hung up on me! I don’t know what to do about this, she is very tempermental and will probably get annoyed if I try to confront her about it. Does anybody with past experience on this have any suggestions?

I found your site last night, and I’m so grateful for your words. I was diagnosed with Fibromyalgia and CFS about a year ago, and I’m just now dipping my toe into the spoonie community. Thank you for sharing your wisdom and for giving all of you with invisible illness a voice.

The scariest part was going without a diagnosis for about two months with fingertips bright blue (even when I’m inside) and extremely painful when touched. I was just diagnosed with systemic lupus a month ago, accompanied by secondary Raynaud’s and thrombocytopenia. I am 21, finishing my senior year at college and getting ready for graduate school for my doctorate in audiology. I also could be considered a very independent individual and it’s been hard to slow myself down and be a little dependent. Due to these last few months, I’ve finally made the decision that grad school will have to wait, and it’s been kind of a disappointment. Your words have helped me get out of a low spot I tend to get into every now and then (usually when blood results show that my blood platelets are still not in the safe zone). It really does help to hear someone else’s experience on this invisible illness, especially when it’s difficult to really paint a picture to people you know what you’re experiencing. Thank you so much

I totally understand how you feel Scooter876 :-[. I also suffer the same condition as you, plus blackouts, incontinence and others.i also became Ill in my teens after being called a clumsy and sickly child my whole life, well at least I knew why now :-). I truly understand the pain of the illness’s, but more saddening the intense pain of being dumped by so called friends literally as soon as they become aware of it. My family also abandoned me, because of my illness and have not been in my life for the last 15+ yrs. my family now is my wonderful husband and cats. Unfortunately my mom in law is very ignorant and makes my life hell, with her complete unwillingness to try to understand, especially when We are late for vists/meals due to me being ill whilst trying to get ready or not being able to make family events earlier in the day ie booking a table at 1pm knowing full well that I rarely ever get out before tea time,even once telling me’ you just need to motivate yourself, you know you could do it if you really wanted to’. She even critiseized my blackouts, saying I wasn’t doing them properly, like I have any say in the matter. People like this are as bad as the illness’s themselves and cause so much pain and hurt to people who are sometimes literally ( I know I was) already at there maximum limit and trying desperately to cling on to something resembling a happy fulfilling life.

I find your posts to be so honest. No candy coating here. I think one of the phrases I’ve come to despise is “How are you today?” Unless it’s my own mother, most people really don’t want to know the truth. Shall I drop my shopping bag for you, tell you all the new screwed up lab results I just received this morning, how I’m freaked out cuz even tho this will be my 3rd port it still scares me to get on that table? No, your jaw would drop. A much better thing to say as an acquaintance is “Is was nice running into you”

OOPS FORGIVE ME-MEMORY LOSS-IT COMES WITH THE MS. I WAS NOT SCREAMING ONLY TYPING IN CAPS DUE TO VISUAL DISTURBANCES,

Your message very inspirational and to the point

I feel as if I wrote these Myself…Bless You

Beautiful! I wanted to “like” every one of the above, in my FB mode. Thank you for poignantly articulating your and so many others’ story, including my own. <3

I was diagnosed with Spinal Muscular Atrophy type III when I was 14.
Symptoms started when I was about 10. With my type of SMA, being very
slowly progressive, I’ve gone through many levels of invisible
illnesses. Now at 50 I permanently use a wheelchair and need assistance
with basic daily activities like getting in/out of bed, bathing,
dressing, toileting, etc. Having gone through those stages I can
definitively tell you I wish everyday I could go back to only having an
invisible illness and dealing with the challenges it presented.

I’m not trying to minimize your struggles, they are real and
challenging. But I want to firmly stress that they are manageable. I
too felt they were overwhelming and life altering as I was dealing with
them. But I can also firmly tell you they are minor when compared to
losing your independence and having to rely on others to perform daily
living activities.

Do what you need to do to maintain your health. Do not worry what
others may think or say. Be happy for the abilities you do have and
work hard to minimize the negatives. However, do not dwell on the
negatives and fall into the trap of feeling things are hopeless. You
have the ability to manage your illness, take every advantage of that
you can. And live life to the fullest!

Hi! I am new to your blog but it was brought to my attention by my sister and I’m glad she showed me. I consider myself to have an invisible illness. I suffer from these headaches every single waking moment and it can either be tolerable or extremely painful. It’s hard to live with because no one actually believes I have them. They think it’s stress but it’s been happening for years and it has spiked recently and has affected some of my senses. It’s hard because no doctors have found any cause and it’s just gets harder to explain to people because no on understands. Reading your posts has given me joy and makes me feel not as alone even though we don’t suffer from the same thing. Thank you for what you do!

Tell them it’s kinda’ like Lupus. They’ll ‘get’ that. I once had a divorce court judge ask if my disease was fatal. I asked her, “Do you consider lupus fatal? It’s kinda’ like that.”

Thank you. My invisible illnesses have me on the ropes right now, from yet another surgery that is likely to do nothing but scare airport security. I’m to tired to fight right now. My spirit is nowhere to be found at the moment. Thanks for helping me fight without getting out of bed. My babies, 3 and 5,already, will be up and running soon so thanks for fighting by my side.

You take my thoughts and put them into words! This is exactly my feelings. A lot of people also think chronic disease is “laziness” in disguise. I have given up on explaining and just smile like I’m crazy. Thank you Christine for all your writings. I just found you through a MS Website. Your articles made my morning.
thank you.

Hi Lisa, I will need to speak with my asthma doctor about it – I’m not remembering, been too long. If you’ll give me some time I will get you the names of the blood draws he did – I do recollect that several tubes were drawn (5-6), I was given a flu shot in one arm and a pneumonia shot in my other arm – then given directions to return in one week and they would draw another set of bloodwork to be tested – looking for antibody reactions. Feel free to recontact me, should you not hear from me in a bit. Later, Dee

Christine you are such an inspiration keep up the fight and I will include you in my prayer circle. I am new to the site and am deeply touched by the comments from other viewers . i hope the following tips that help me will be of use to you all!! My Fibromyalgia / chronic fatigue started in 1987 after severe flu and I went from being a healthy 28 year old mum of two little ones to an old age pensioner in just 3 days! It feels like I have skipped middle age altogether. After all this time I am yet to find medication effective but keep going with chiropractic treatment for the lower back and general spinal pain, and physiotherapy for more of the muscular spasms . I live for my visits to the local heated pool where I slowly walk and cycle (under the water) and gentle stretches recommended by the physic. Using the sauna gives joints and muscles some soothing relief as does the spa where I can focus all the problem areas on the jets for a few minutes at a time. Some recommend Magnesium tablets for muscle pain, and naturopaths can be of help in some cases. The Spoon philosophy is so relevant and I follow the principle I also use Lectric Soda crystals in the bath or Epsom Salts they help muscles to ease a little. If you have health problems such as heart/blood pressure/dizziness etc. check with your own doctors before going to saunas or spas !!! Our local hospital has a Pain Management clinic on a 6 week cycle and it includes Myalgia patients (Hooray for recognition!! Their tips include occupational physio changes to daily tasks such as how you stand, walk and work.There are physic classes to try out new stretches under supervision and relaxation classes and hydro therapy classes. Check with your local hospitals for similar programmes well worth the effort to get there! One day at a time everyone keep positive as much as you can xx

Thank you, Christine for this site. I have Mixed Connective Tissue Disease, along with Crest Syndrome and scoliosis of the spine, affecting my entire half of my body. I am 63 and had seen a doctor for 13 years, who sent me to other doctors, (13 in total, including her). But, suddenly, she disappeared. I went to a female doctor, another one, who is an internist. She was concerned because I was on 300 mgs/day of morphine. She was afraid my body was too used to it, to work. So, she put me on Butrans Patch, but my insurance wouldn’t cover for any more. Then, she put me on buprenorphine, which also was better for me. But, she suddenly disappeared too. The clinic I went to, didn’t bother to call me, the day of the appointment, to tell me she was gone. Plus, when I went to fill the second of three refills, only having two left, I found out from the pharmacy, they stopped my prescription, again with no one telling me. So, I talked to the head of the clinic, a doctor who once gave me a script for morphine, when my primary was sick, one time. She said she was putting me back on morphine, only to wean me off of it, again. I was off the morphine for four months, then, but here she is, putting me back on it. Then she sent me to a jerk doctor. This man, only saw me for less than 5 minutes and when he first saw me, he looked at me as if I was a drug addict! He claimed he read my history, saying I didn’t have any positive ANA tests. But, if he had, he would have seen I had them off and on. Any doctor written web site, like WebMD or the Mayo Clinic’s site will read how the blood tests aren’t necessary always positive. This makes it hard to diagnosed the diseases I have and the others, other patients have.

Not only that, he didn’t see that I haven’t had a blood test in two years! He didn’t examine me, order any tests, but decided I need to get off the morphine, too. He, also gave me another script, which I am not filling, for I still have plenty of morphine from the Head Doctor’s script. Not only that, he would not listen to me, when I told other doctors dianosed me with lupus, and told me when the morphine was finally gone from my body, I am just to take over the counter pain pills! Then, he dismissed me, as if he was a GOD. I will not go back to this man.

In the meantime, I am only taking 60 mgs/day of the 180 mgs/day the last two doctors prescribed, the head doctor and the jerk. I am trying to get myself off the morphine, myself. I have tried cutting the 60 mgs. pill in half, only taking 30 mgs./day, but I get restless legs at night, severe chest pains, (I have a leaky valve) and severe pains in my intestines. They both are so bad, that it causes me to have headaches, raises my blood pressure and gives me diarrhea and vomiting, too. To rid of the chest pains, I have to take two of my blood pressure pills and a nitroglycerin. Eventually the chest pains go away, but the pressure in my chest, makes me sore for several hours afterwards.

I’ve tried calling other doctors, but when they hear I’m a chronic pain patient, they show me the door. They are too afraid the DEA will come down on them, like they have other doctors. I don’t know what to do.

I’ve read on other sites, where chronic pain patients are having the same problems, getting their medicines and a doctor, because of the DEA including all of us, honest people in their “War on Drugs.” They have no idea what we are suffering and have no medical background knowledge to make these judgements, about all of us being drug abusers.

So, to help us all, get the word out, understanding our pain and suffering, so the DEA stops oppressing us, as patients, our doctors, the pharmacies and the honest drug manufacturers, I made a petition for everyone who is suffering or knows someone who is, to sign. It is on a White House website. If you wish to go there, sign the petition, going to everyone, including the President, here is that link:

http://petitions.moveon.org/sign/stop-the-judgement-of?source=c.em.cp&r_by=10582339

Please Christine or admin, don’t delete this link, it is to help all of us. Making the government, DEA and other officials to be aware that over 100+ millions of U.S. Citizens are suffering from these silent illnesses, that are ruining our lives with chronic pain.
There is another site, where the owner is working diligently to help all of us. He is going through our same experiences and is very helpful. His name is Dennis Kinch, and he posts on this site, talking about his own site and has written a book, helping us. The site you will find him on is called, “Heroes of Healing” a pain survivor community. If you google it, you will find it. Please, tell everyone you know, who are suffering, about the site where my petition is. Ask them to sign it too, to make everyone aware that our pain, our illnesses are truly as bad as cancer patients, but just because we don’t have cancer, doesn’t mean we are not having the intense pain as they. I know this, first hand, for I took care of my dad and my fiance’, both died of cancer, pain free. They weren’t allowed to suffer, neither should we.

Thank you, for reading this long post. Please feel free to comment, about my petition and my story. I will look forward to all replies.

Again, thank you, Christine for your wonderful site and efforts to help us all.

My husband sent me this link. When we met I opened a drawer and showed him all the pills I take. Two weeks later we were married. It was 16 years ago. He’s like an oak tree in my life. He is the only one that gets it.

Here is something I come into with my family a lot I am too tired to go to events , I am afraid to decline because I get responses like, I have bad health too I keep going!! Or Mom is 67 and woeks in pain she is a trooper!! It is very hurtful to me. I try very hard to manage my resposibilites . I have had several surgeries. Endometriosis and I have autoimmune disease as well as Fibromylagia and TMJ arthritis in my back.. nothing comes easy. I almost want to make comparisons my illness is worse contest. Which is a bizarre reaction. I feel like they dont believe me, staying home in bed like a crumpled piece of paper is not better than eating cake and laughing with my kids and family.

I have Fibromyalgia, chronic back pain, Osteoarthritis, muscle spasms and torn ligaments in both my ankles. I got diagnosed with Fibro eleven years ago when I was a teenager. It all started with an accident doing laundry and falling down the stairs. I really enjoy reading a few of your posts. I’m an independent person myself too and getting frustrated that I can’t do things on my own. I can relate to a lot of the things you mentioned like not being able to sleep, not being able to do the things I used to like running, and just feeling tired all day even after waking up. It’s like I wish I could live a normal life and be able to do the things my friends are doing but sometimes I feel like I’ll never be able to accomplish any of my goals. The hardest part was when I had my accident, not having any friends come by to check how I was doing.

Thanks for mentioning Joy of Healing and the Overlee’s – I will research them to see if that’s a path I should be on. After having Fibro & Hypersensitivity for most my life – only dx’d with Fibro about 14 years & dx’d thru blood work for the H/S about 3 years ago – yet I’m almost 58 and I’m tired of everything I’ve tried and getting nowhere. God Bless!

Thank you, Christine. I’m certain your article strikes home with sooo many. I suffered with fibromyalgia with more years than I can remember. I too am familiar with the comment, “…but you look so good.” It was usually offered at the precise moment when the pain was ripping through my body and standing let alone moving was a struggle. I was torn between violence and tears. Perhaps it was a good thing I could barely move. I often thought and sometimes verbalized, “if every part of my body that hurt were bleeding, then you could begin to understand what I’m feeling.”
I am fortunate to have found Joy of Healing. Thanks to this unique body, mind, spirit wellness work and its founders Andrew and Tamara Overlee I have been both pain and prescription free for more than thirteen years.
Never give up in your quest for wellness! Do the research and find the healing modality that works for you. Trust your intuition to guide you.