Validation and Online Communities

I have read many blog posts and consistently hear stories about patients who are not believed when they report symptoms. From doctors to family to strangers, people with an invisible illness hear comments like "It couldn't possibly be that bad" and "Why are you using your mother's handicapped placard?"

For a sample of comments by doctors look at the end of this blogpost by Kelly Young of @RAWarrior. These comments made by doctors at the conference are not likely to be surprising to patients with inflammatory arthritis, but if we have not experienced this we have heard reports from other patients.

Just this weekend a friend said she wanted to see a blog post about the type of experience she had during a appointment during the week. Her main symptom was a serious and recent lack of energy. After she described her symptoms the doctor said "Joanne, you've had inflammatory arthritis for 30 years. Your body is getting tired of fighting." Knowing her own body as well as she does that response was not good enough but what can she do?

Tough as it is to get good treatment from doctors who don't believe you, imagine your family and friends echoing those sentiments. Here are some quotes from online friends...

"People don't think that you have a chronic, painful, fatiguing disease if you don't look too bad and they expect too much from you.  Even my own family wants me to be like "before" though they all know what I have been through in the preceding years. Their "forgetting" is selective depending on what they want from me even though everyone is thoughtful and protective of me most of the time."  Julie

"One of the teachers - I used to help out in her class, voluntarily I might add. When I had occasions that I just couldn't stay on to help after work, I got the impression that she didn't quite believe that I was as bad as I said I was. She would often use the phrase, you’ll get better one day."  Sue

You're looking good today

"“You look so good, so young!” Oh how I wish I felt that way!!!!! No, people don’t understand. They don’t understand how when I hurt that it drains me and I just can’t do it all any more and have any energy left after. I’m going to vacuum today and that will pretty much drain me. If I go somewhere, that is all I do. No housework on those days. " Jeanie

"People come up to me and say "oh you're looking really well " and I actually feel like c**p..lol." Pam

Some weeks it sounds as though almost everyone with an invisible illness and a disabled  parking permit has been a subject of comments and nasty notes.

Nanaimo disabled parking decal

All of this takes a real toll on patients. There's a term for it too - Invalidation.  In fact "In patients with rheumatic diseases, invalidation has been shown to relate to worse physical and mental health and more pain." as seen in this recent study from the Eular 2014 abstracts.

The paper starts off with this statement  "The term invalidation refers to the patients’ perception that their medical condition is not recognized by the social environment. It includes non-acceptance, misunderstanding, disbelief, rejection, stigmatization and suspicion that the problem is exaggerated or purely psychological."

Here's another paper. This one assesses patient's perceptions of responses from others in an attempt to develop a measurement scale.

"The Illness Invalidation Inventory (3*I) assesses patients' perception of responses of others that are perceived as denying, lecturing, not supporting and not acknowledging the condition of the patient. It includes two factors: 'discounting' and 'lack of understanding'."

More awareness and more respect for patient reported outcomes will help on the medical side of things. Collaborative medicine may also make a difference as Drs try to engage patients in the decision making process.

It helps patients to find sources of online support. In one support group I know well members agree that it is a good way to talk about problems and fears for now and in the future without worrying the people closest to them. In these groups there is usually very little skepticism from other patients. That experience of acceptance and support, along with practical ideas can help to counteract invalidation in other areas.

Using Online Health Communities to Deliver Patient-Centered Care to People With Chronic Conditions

" OHCs (Online Health Communities) help to facilitate communication among professionals and patients and support coordination of care across traditional echelons, which does not happen spontaneously in busy practice. "

Taking Control Part 7: Dr Sherise Ali: Brain Fog Sjogren's 2014

Brain Fog in Sjogren's Syndrome is a topic that quickly found an audience at the National Sjogren's Conference in Canada this year. This topic was addressed by Dr Sherise Ali this year. She is a neuropsychiatrist and has recently written a chapter on psychiatric care of the rheumatologic patient for the Harvard Medical School and Massachusetts General Hospital textbook of Psychiatry of the Medically Ill.

Brain fog is defined as "a generalized dysfunction of concentration, short-term memory and cognitive speed which is disruptive to the patient's lifestyle and not attributable to another cause."  There is no specific pattern and there can be ripple effects in your life. Compared to traumatic brain injury brain fog is mild. Your IQ is not decreased but you may need to find alternate routes to get to the same endpoint.

It is disruptive to the way you feel about yourself when your cognitive speed is slower that it used to be but Dr Ali said it should have no dramatic effect on your function.

Brain Fog by Annette McKinnon

Pain also has a deleterious effect on brain fatigue. So far brain fog is not consistently found to be associated with Anti-Ro or Anti-La antibodies and no one antibody has been isolated that is consistently associated with or specific for CNS (Central Nervous System) symptoms.

In 50% of patients who undergo an MRI for diagnosis the findings are normal, showing the limited role of MRI in this diagnosis. The most effective way to diagnose brain fog is neuropsychological testing. Dr Ali said that this symptom has an insidious onset, is non-progressive, not necessarily associated with severity of illness and can occur at any time. 

Brain fog is becoming more and more recognized as a symptom of CNS involvement in Sjogren's Syndrome. The most likely mechanism is inflammation of the cerebral vasculature. 

Dr. Sherise Ali speaking at the National Sjogren's Conference

Taking control of this symptom is not easy, but it is very possible. Dr Ali gave us these conclusions as well as some strategies to support our brains.

Conclusions:

• Play an active role in your medical management - inform your   doctor of OTC or herbal remedies and take your agreed on    medications.
• Talk to your doctor and ensure there is no other medical cause
• Use behavioural strategies to circumvent cognitive issues
• Keep socially, physically and mentally active
• Practice good sleep and dietary habits
• Prevent, recognize and manage clinical Depression and Anxiety
• Use adaptive coping mechanisms
• Minimize stress, anxiety
• Seek positive relationships
• Join a support group
• Seek counselling for complicated emotions
• Seek treatment for suspected depression and other psychiatric conditions
• Allow yourself to feel sad sometimes, it is a normal emotion

Strategies:

Learn a new language

Brain training, games, puzzles
Physical activity (to increase blood flow to the brain)
Pace yourself
Engage in creative activity
Good sleep is important. Can try a pre-bed ritual.
Seek positive relationships
Manage negative emotions
Identify your stressors and work on them
Seek treatment/professional help and/or a counsellor
Deep breathing and progressive muscle relaxation can help
Acceptance as a method of easing frustration was suggested. 

Watchwords from Dr. Ali :

"Use it or lose it."
"You don't want to lose synapses."

Advice on circumventing cognitive issues with behavioural strategies:

Make lists of things you want to do each day. Jot things down as they occur to you.
Keep pencil and paper handy near the phone.
Take notes at work, especially if you are learning a new task - take notes on all steps involved.

Taking Control Part 6 - Dr Raed Alhusayen: The Skin

Next at the Sjogren's Conference we heard about another problem area - this one where people seldom take our complaints seriously. After all, they say, "Doesn't everyone have dry skin?"

Dr Raed Alhusayen is a dermatologist at Sunnybrook Health Sciences Center. His areas of interest include autoimmune skin disease and skin lymphoma. His talk was titled "Sjogren's Syndrome and the Skin" so we were on the road to finding out more.

Dr Raed Alhusayen at the round table discussion  (Photo Dona Lankin)

He said "Moisture is the key" and reviewed the main skin manifestations in Sjogren's. They are vasculitis, dry skin and Raynauds. For Raynauds he emphasized the importance of keeping your fingers and toes warm. Two layers is better than one. He also mentioned warm oil massage as being helpful because the oil holds the heat longer. (see ending for details)

Dry skin affects 50% of Sjogren's patients. Here are his tips:

A bath is better than a shower
Lukewarm water
*Non-soap hydrating cleansers (eg. unscented Dove, Cetaphil, Cliniderm, Cera Ve)
Pat gently, don't rub
Apply moisturizing cream immediately after to trap the moisture
Apply moisturizing cream 2 to 3 times per day
Wear cotton clothing

There are 3 types of moisturizer 

1. Oil based which includes ointments. They are water insoluable and more effective
2. Water based products like gels, lotions and creams. They are water soluable and less effective
3. Emulsions which are a mixture. Oil in water or water in oil.

Moisture loss is a real hazard  (Photo Annette McKinnon)

To reduce moisture loss from the skin you can use barrier creams that trap water. They are very effective on dampened skin. This category includes lanolin, mineral oil, lecithin, beeswax and two others new to me called squaline and dimethicone. Barrier creams are the best and petroleum jelly is one that is effective but thick and greasy. You may at some times need medicated cream for better control.

Other ways to preserve moisture are humectants like glycerin, urea, honey, hyaluronic acid and sorbitol that attract water from the dermis or emolliants that repair the skin barrier and replace your natural lipids. Emolliants include ceramide (a natural lipid in the skin), cyclomethicone, jojoba oil, decyl oleate, dimethicone, propylene glycol, shea butter and coconut oil. Now you know what to look for in the ingredient lists. 

Dr. Alhusayen recommended some moisturizerrs: Aveeno, Cetaphil, Dove, Eucerin, Lipicort, Lubriderm, Olay and Epicream. (the last one may be covered by insurance). 
Some of those mentioned are humectants, some are barrier creams and some have the features of both.

In conclusion he emphasized that supportive skin care is simple and yet essential to improving the quality of life in Sjogren's patients

A few more tips 

Warm Oil Massage for Raynauds

Use a natural oil e.g. olive oil. Make sure the heat is low and then rub it on both hands and feet including between the fingers and toes. Put socks and gloves on after this to preserve the warmth.

For skin fissures you can use Crazy Glue.

Facial moisturizers should have an SPF of 30.