Sunday, September 13, 2009

Some Of These Things Are Not Like The Others (Invisible Illnesses)

This post is not meant to split hairs, or invalidate anyone suffering from any illness. This week is Invisible Illness Awareness Week, and I've been thinking about what specific aspect to write about. It strikes me that more illnesses are invisible than not, so are we justified in classifying ourselves as "special"? Someone with a skin disease, a missing or deformed limb, or other visible sign of disease - we don't see them very often. However, the more people you talk to, the more you find out are living with some kind of invisible ailment, whether it be PMS or diabetes. So, having an invisible illness is common. What is not as common, though, is having an illness that it is invisible not only to strangers and family, but also to your doctor and his/her diagnostic tests.

Fibromyalgia, ME/CFS/CFIDS, myofascial pain syndrome, even depression and anxiety - all of these things I am burdened with are invisible to EVERYONE but me. Symptoms may be visible sometimes, such as when I'm the only one in the room sweating profusely, or when my hands shake. But most of the time, there is no objective evidence of my illness. My blood tests come back fine, every time. Luckily, my doctors believe me about my pain. That is far as their support goes, however.

I am still treated by my GP like a hypochondriac. The last time I went to him with new symptoms, he told me I had hypoglycemia, even though the timing of the symptoms "didn't make sense" (his words). It wasn't his hypoglycemia theory that was wrong, it was my symptom report. He has now started saying things to me like, "I can't help you". Literally.

When you have diabetes, your doctor looks at your test results and heaves an inner sigh of relief. He knows what to do. He looks at you straight and gives you a diagnosis and treatment. When your test results are "normal" he feels helpless, confused, suspicious. He tells you how to eat and exercise better, and sends you to a psychologist. He may write in your chart that you are malingering, or causing your physical symptoms because of emotional disturbance (a somatic disorder). It is now in your file that you are a 'difficult' patient, and that colours the way you are treated by anyone who sees your file.

There are people out there who adamantly believe that your diagnosis is "made up" - often by the psychiatric or pharmaceutical lobbies in order to push their products. They call your ailment a "trend", a "fad", a "designer disease". All of these labels devastatingly invalidate the very real suffering a person with this kind of illness experiences. When even our doctors don't believe us and can't help us, we are left very alone, and all we can do is try to "cope" with our symptoms. We are bitter, defensive, angry, and hopeless. We feel abandoned by the medical establishment. We fall through the cracks and flail about in desperation.

Even worse, we give up on ourselves. We stop looking for our own cure. We slide into powerlessness and forget to take care of ourselves - if we knew how to do this in the first place: a lot of people with fibromyalgia and ME/CFS are people who have always put caring for others above caring for themselves. We have always martyred ourselves. We thought that was what good people did. This tendency contributed to the breakdown of our bodies, and contributes to our decline and, in part, prevents us from gaining back our health. We can't admit this, however, because it is like admitting two things: 1) our illness is in our heads; and 2) our illness is our own fault. Neither of these things are true, and believing them to be so is just another stressor.

We are fighting a war against everything and everyone around us that subtly and not-so-subtly tells us our suffering is "not real". Our post-modern society hold science as the truth, the whole truth, and nothing but the truth. We don't remember that once upon a time, science could not diagnose diabetes, celiac disease, or hundreds of other diseases that are now accepted as real and never invalidated. Each day we think that scientific knowledge is complete, and thus if science can't see something, it doesn't exists.

Only we know our subjective pain, fatigue, weakness, soreness, faintness, restlessness - and a thousand other symptoms - are real. They are so real to us that we can barely take our minds off them. We have nothing else to talk about, and other people fade out of our lives as though we've suddenly become obsessed with having ghosts in our houses. Our illness is our poltergeist, and throws everything we want for our lives into chaos and havoc. And we cannot even prove it's existence.

Above all, we with invisible illnesses that even our doctors can't see, need VALIDATION. We need you to believe us, we need our doctors and our families, friends and the public to acknowledge the ghosts of our suffering, to treat them as real physical beings destroying our lives. We need you to see these ghosts as facts, as givens, and then act accordingly. Erase every doubt from your behaviour towards us if you can't erase the doubts from your mind. Don't bemoan the person you once knew who was not plagued by her symptoms. Accept us as you would accept a new mole on our face, as you would still accept us if we gained 50 lbs (and some of us have). And don't be afraid. Our symptoms are only ghosts because you are afraid of them.

When you validate our experience, we find the courage to fight for ourselves. We feel you are behind us, cheering us on. That kind of support is absolutely essential for us to regain a sense of power over our lives, confidence that we can survive our illness. We can't do it alone. We can't take our own care seriously if no one else agrees it should be a priority. We can't exorcise the ghosts unless we believe in their existence, and we can't firmly believe unless you do too.

Thursday, September 03, 2009

“30 Things About My Invisible Illness You May Not Know

We’ve all seen the list “20 things about me” “50 thing about me you didn’t know…” They can actually be interesting if you want to get to know the person better! We’ll we’ve got one I haven’t seen anywhere yet, “30 Things About My Invisible Illness You May Not Know.”

Just copy and paste it below and put it up on your blog, send it to your friends, paste in on Facebook (if it’s too long put it in your “notes” section.)

Let’s spread the word about II Week this way and it’s a wonderful way to share a little bit about your life.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: ME/CFS, Fibromyalgia (and mental illnesses in various stages of 'recovery')
2. I was diagnosed with it in the year: Fibro - 2003
3. But I had symptoms since: 2003
4. The biggest adjustment I’ve had to make is: HUGE reduction in activities of all kinds, especially physical and social
5. Most people assume: I'm selfish, lazy, and NOT SICK
6. The hardest part about mornings are: the pain. Getting out of bed, waiting for the meds to kick in, I feel the sickest.
7. My favorite medical TV show is: I can't afford cable, but I do like Medical Mysteries
8. A gadget I couldn’t live without is: My computer (and internet), my blender, microwave.
9. The hardest part about nights are: the pain. Being unable to get quality sleep.
10. Each day I take 12 -15 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Wish I could afford to get some. Please don't suggest any to me unless you are willing to pay for it.
12. If I had to choose between an invisible illness or visible I would choose: I honestly don't know and I don't think there is any point in questioning it. I have invisible illnesses - there are pros and cons to it. I can hide if I want to, but I also find myself being treated like I'm not sick or hurting by people who don't know.
13. Regarding working and career: I try not to think about it. Obviously I don't have a career, but I "work" at being a health advocate and volunteering for WAMCARE, as well as trying to do the full-time job it is to take care of myself and heal all my emotional and physical wounds.
14. People would be surprised to know: I care a LOT about other people. I want to make the world a better place for everybody.
15. The hardest thing to accept about my new reality has been: trying to feel like a worthy human being despite my inability to "work"
16. Something I never thought I could do with my illness that I did was: turn it into an advantage by seeking out other people who share it and supporting them
17. The commercials about my illness: what commercials?
18. Something I really miss doing since I was diagnosed is: camping, roller-coasters
19. It was really hard to have to give up: denial
20. A new hobby I have taken up since my diagnosis is: beading
21. If I could have one day of feeling normal again I would: spend time outdoors with friends
22. My illness has taught me: the value of true friends
23. Want to know a secret? One thing people say that gets under my skin is: "You should lose weight and exercise"
24. But I love it when people: understand
25. My favorite motto, scripture, quote that gets me through tough times is:

Enough. These few words are enough.
If not these words, this breath.
If not this breath, this sitting here.

- David Whyte

26. When someone is diagnosed I’d like to tell them: There are thousands of us out here, reach out, create a community of support around you.
27. Something that has surprised me about living with an illness is: Sometimes you can forget.
28. The nicest thing someone did for me when I wasn’t feeling well was: my dishes
29. I’m involved with Invisible Illness Week because: it is important that the world knows about all the people suffering in invisibility. It is important to have your voice heard.
30. The fact that you read this list makes me feel: grateful


I sometimes write things that I don't really mean or believe. These are not to be taken literally, nor as definitive statements about me or my beliefs. Thoughts and emotions are transient, and I reserve the right to change my mind, generalize, exaggerate, give strong opinions, or write other possibly offensive statements. I don't lie, but I may say something that's not true to check whether I believe it or not, or to make a point. Call it creative license. This is my blog, and do have the right to say what I want. I'm using it in creatively therapeutic ways. Whatever the reader may think of me and my words, please believe that my core intentions are always good and I never willingly hurt anyone.